Showing posts with label down syndrome. Show all posts
Showing posts with label down syndrome. Show all posts

Is Curcumin A Breakthrough Treatment For Down Syndrome?

I have great news. We are going to be starting Jaden on Curcumin as soon as it arrives in the mail, hopefully this Friday. We will be doing updates on everything we notice as far as improvements in speech and/or cognition. I wanted to post a first hand account from an extraordinary young lady who's younger brother, Oisiyyah has Down Syndrome. She has taken on the role of activist, author, researcher and teacher for not only her brother but many other parent's and is truly an inspiration in all that she does. She has also written a book called, Down Syndrome: What you CAN Do, available at LuLu.com She, along with many other parent's has been witnessing first hand the amazing changes taking place in her younger brother. Please read below to hear what she has to say.

Written By:
Qadoshyah Fish
Longvida Curcumin – Our experience with Osiyyah

New research regarding Down syndrome is always going around the web. Sometimes the research is very in-depth and I may not have the time at that exact moment to research that particular subject, so it’ll go in my “Research to look at” folder. But, when I was approached with information about Longvida Curcumin back in April of this year (’09), I jumped into the research mode. The small bit of information I was presented with initially and asked to look at further looked so promising, I had to know more about Longvida Curcumin.

It only took about two days of research before I was completely convinced that Longvida Curcumin was something that showed a lot of promise for individuals with Down syndrome.

Over the years, I had researched Curcumin, the active ingredient in Turmeric and found it to have many benefits. But, there was a problem as to how it could be adequately absorbed into the body, especially the brain, where it is needed most.

For several years we gave my brother, Osiyyah, Turmeric in hopes that it would be beneficial to him. We never noticed any changes, so who knows if it was actually helping him or not.

Curcumin has many benefits: Preventing amyloid plaque build-up, breaking up amyloid plaques & tangles, reducing inflammation & oxidative stress, causing neurogenesis & synaptogenesis, increasing glutathione levels, anti-cancer and so much more.

We started giving Osiyyah Longvida Curcumin the first part of May. As usual, we started with a small dose and slowly increased the dosage over the course of a week. For the first week we were at 500mgs/day, then went to 1000mgs/day for 8 weeks. At the 8 week mark we increased to 1500mgs/day and after a week of that we went to 2000mgs/day. That is the dosage we have been on since July.

About 2 weeks into Osiyyah taking Longvida, we started noticing changes. To put this in perspective, we were *not* expecting to see any results or changes for several weeks (I had 8 weeks in my mind), since for some things, it may take awhile to see any results. But, the changes we started seeing were not just coincidence. They were HUGE changes. Changes I would’ve never expected. Changes that weren’t happening before Longvida.

What were those changes? Those changes all involved Osiyyah’s speech. Osiyyah is 4 ½ years old and his speech is *very* delayed for his age. Osiyyah started saying new words very frequently . . . every day he would have a new word or 5 new words! He copied everything we’d say and repeat the words we said.

Within a couple more weeks, Osiyyah started using two word sentences very regularly. And he also continued to say new words and KEEP saying those new words. It wasn’t just a one-time coincidence.

As the weeks went on, we continued to notice MASSIVE changes. Osiyyah’s speech was picking up so much and so quickly, it was amazing.

He started using several word sentences on a consistent basis and has not stopped. These changes weren’t a one-time thing, they are changes that have occurred and continue. One of my favorite sentences he says is “Whole Bunch” – the way he says it is just too cute!

As we are about 5 months into giving Longvida Curcumin now, we have continued to see progress. I’d call the changes we have seen over the past few weeks, “deeper progress.” Osiyyah asks questions all the time, like “Why?”, “Who?”, “What?” & his newest one as of today “Do?”. As in “Why are we doing this?”, “Who’s is this?”, “What do you want?” or “What are you doing?” or “What can I do?”.

It’s very neat and exciting to see Osiyyah being so much more interactive and understanding in everything :)!

For more details of the changes we’ve seen, they can be seen at our blog - http://gotdownsyndrome.blogspot.com/search/label/Longvida

New Study Proves Effectiveness Of Supplementation With Down Syndrome


There are many important studies going on in Universities across the country testing the effectiveness of supplementation and Down Syndrome. Study after study seems to keep showing the same results. That people with Down Syndrome can benefit tremendously from supplementation both with their immune systems and in their overall development.

Serum cholinesterases in Down syndrome children before and after nutritional supplementation.

Institute of Genetics & Hospital for Genetic Diseases, Osmania University, Begumpet, Hyderabad 500016, Andhra Pradesh, India.

INTRODUCTION: Down syndrome (DS) children have different degrees of developmental abnormalities associated with mental retardation. A cascade of pathological changes triggering alterations in cholinesterase-mediated functions seems to be the cause of neuronal and muscular dysfunctions, such as memory loss, disturbed cognitive skills, and language impairment in virtually all DS individuals, but there are currently no efficacious biomedical treatments for these central nervous system-associated impairments. The present study aimed to evaluate the effects of nutritional supplementation on cholinesterases in serum of DS children. METHODS: Activities of acetyl- and butyrylcholinesterase were analysed in the serum samples of 40 DS children, along with an equal number of age- and sex-matched controls under study. RESULTS: The activities of serum acetyl- and butyrylcholinesterase were found to be low in DS children before nutritional supplementation, compared to controls, and showed considerable improvement after six months of supplementation of zinc in combination with antioxidant vitamins and minerals. A significant improvement was also observed in cognitive skills and behavioural patterns after nutritional supplementation. CONCLUSION: The present pilot study suggests the significance of early intervention with nutritional supplementation in DS children to ameliorate the severity of this disorder.

PMID: 18695865 [PubMed - in process]

"Protein Linked With Down Syndrome May Help Treat Breast Cancer"

Something I read a while back which I've read before. Very interesting, indeed.

Protein linked with Down Syndrome may help treat breast cancer

Washington, Feb 5: Breast CancerResearchers at the Texas A&M University College of Veterinary Medicine & Biomedical Sciences have found that a protein long suspected to play a role in Down Syndrome might also contribute to treating breast cancer.

It is already known that Down Syndrome is caused when an individual has an extra copy of the 21st chromosome, giving them a total of three instead of the normal chromosome pair.

And now with advancements in medical care, people with Down Syndrome are living longer and healthier lives.

Along with this improvement came the observation that individuals with Down Syndrome have a significant decrease in risk for several types of tumours.

The most surprising observation is that women with Down Syndrome are 10-25 times less likely to develop breast cancer.

Scientists believe that this effect is due to the presence of one or more ‘tumour suppressor’ genes on chromosome 21. However, the identity of such genes has not been known, until now.

“Years of research into the genetics of Down Syndrome have helped us to discover a very important gene on chromosome 21,” said Dr. Weston Porter, associate professor in the Veterinary Integrative Biosciences Department.

“This gene, called Single-minded 2 or SIM2 is thought to play an important role in Down Syndrome by regulating neuron growth in the developing brain. Based on its developmental role, we hypothesized that SIM2 may also be involved in breast cancer, which is essentially a disease of uncontrolled growth,” he added.

For past five years, Porter and his colleagues have been using human breast cells and mouse models to validate this hypothesis, and what they have found they consider it very promising.

SIM2 is lost or suppressed in a majority of human breast tumours, and if the gene is deleted, it triggers rapid tumour growth in mice.

However, the process by which SIM2 suppresses breast cancer is complex and not fully understood.

This same protein, which might hold so much promise for breast cancer treatment, is also thought to contribute to the negative effects of Down Syndrome.

“As we move forward, it will be important for us to understand the circuit of SIM2 and how it is turned on and off. In light of the available data on breast cancer incidence in the Down Syndrome population and our experimental data, knowing how to turn SIM2 expression on and off and identification of down-stream targets should have great therapeutic value,” Porter said.

Although the study is in its early stages, it still represents a promising weapon in the fight against breast cancer as it sheds light on a previously unknown target for which to shoot.

The study is published in the journals Molecular and Cellular Biology and Carcinogenesis. (ANI)

Food Intolerances & Down Syndrome



Nutrition and prevention are topics close to my heart. I, like most of you reading, have a child with Down Syndrome and have sped up my studying of nutrition and health even more because of this. Some areas of nutrition and prevention are becoming more familiar to traditional health professionals, however most traditional Dr's are still vastly under-educated when it comes to healing and prevention.

The very nature of Down Syndrome makes the immune system more susceptible to viruses and bacteria. Simple things the "typical" immune system may be able to fight off can become more prominent issues in Down Syndrome. Of this, most parents are aware. But, and this is a huge but, there are many, many things that can be done to create as normal an immune system as possible much to many Dr's surprise. As we all know, there are many variables in Down Syndrome and the degrees of difficulties vary tremendously. Some parents can talk about how perfectly healthy their child with Down Syndrome is, yet for others they have never ending health issues with their child. For most parent's their child falls somewhere in the middle. I wanted to write this because everything I have been studying and learning over the last several years points to several known facts.

1. Most people with Down Syndrome have cow milk protein intolerance.
2. Most people with Down Syndrome have varying degrees of gluten intolerance.
3. Most people with Down Syndrome have a hard time metabolizing sugars.
4. Most people with Down Syndrome have Mal absorption issues with foods.
5. Most people with Down Syndrome can avoid MOST health issues if they follow certain dietary guidelines.
6. Most people with Down Syndrome can have near normal metabolisms and avoid most weight issues if they follow certain dietary guidelines and exercise.

In case you are reading this and already know all of these things, I applaud you and would love to hear what you are doing and all about your personal experiences making certain changes in the diet. However, if you are reading this and don't know most of this, I will share more information.

Roughly 80% of the immune system is located in the digestive tract. 80%! This is very important to know, and something that even the health community wasn't so aware of until recently. This should be taught to all of our children early on in school. Because most of the immune system is in the digestive tract, it makes perfect sense that every single thing we eat affects our immune system. Until recently, health professionals usually ruled out "food allergies" if the patient didn't show obvious signs of digestive distress. However what they are now realizing is that most people manifest food intolerance's in many different ways. When someone is having constant sinus issues, or eczema, or asthma or headaches, these are all major signs of food intolerance's. Symptoms such as bloating, water retention, sleepiness, moodiness, etc. are also signs of food intolerances. People may have varying degrees of different symptoms, yet they can all share the same food intolerances.

There isn't total proof that all people with Down Syndrome are gluten intolerant, however there is more and more evidence leading researchers to study the different types of gluten intolerance. This is one of the most descriptive articles summarizing how different food intolerance's work. Please read this for more detailed information.

We have had Jaden on a gluten free, dairy free, sugar free diet for the last year and a half. All I know is that Jaden hasn't had one cold or runny nose in this time. Before we had him on this diet, he would get a runny nose every few months. We also notice that if we slack off with the diet, he almost immediately gets congested, especially if we do it for several days straight like we have when we're traveling and we get lazy. If you want more information on this subject, just email me!

Ginkgo Biloba & Nutritional Intervention

There is a documentary coming out about a woman I have come to know over the last few years. As part of this very special community of parents, Teresa Cashion is definitely someone who has taken her role as advocate and mom very seriously. I was lucky enough to be introduced to her through the Internet on one of my Yahoo groups, DSTNI. This is a group devoted to discussing different natural therapies and nutritional intervention. We've been completely in support of Nutritional Intervention and have had Jaden on supplementation since he was 3 months old. After reading a little about Ginkgo Biloba and its extraordinary effects it has on the memory and for its ability to increase blood flow in the brain, I was more and more intrigued by it's ability to help in Down Syndrome. After all, much of what many top Researchers from Universities across the country are realizing is: If we can help prevent the neurons from dying off in the brain, and at the same time increase blood flow to the region of the brain that is most severely affected in Down Syndrome, they hypocampus, then we could possibly allow for more typical brain development. The studies being done at Stanford Univeristy right now are extremely promising and all point to this hypothesis being correct. Just how to treat the brain, is something that still needs to be completely realized.

In the mean time, parents like me, aren't waiting for all of the trials and medications to be completed and tested. Teresa Cashion, a Dentist from Houston Texas decided to start giving her son Ginkgo Biloba along with different supplementation to see if it could in fact help her son. In her own words, she was completely amazed at the almost immediate results after starting him on Ginkgo. After speaking with her for an extended period of time and her informing me that many other parents were having fantastic results with their own children, I decided to start giving Ginkgo Biloba to Jaden at 16 months of age. After researching Ginkgo Biloba and realizing that the formula I was going to give him had to be regulated, pure and from a reputable company, I was excited to start Jaden on this. Since I research nutritional supplements avidly anyway, I was able to trust the brand I chose. Nature's Way, GinkgGold.

Within the first few hours of giving Jaden his first dosage of Ginkgo Biloba, we noticed immediate changes in his response time. No longer was there a slight delay when calling his name and waiting for a response. It was as if a light bulb went off in his head, and things started to click much faster for him. From that day on Jaden has been on Ginkgo Biloba. We give him 60mg a day, we crush a tablet and put it in some applesauce or soy yogurt. We also give him a multi vitamin supplement every day as well. Many parents also give extra fish oil and other supplements, but as of now we are only giving Jaden these 2 things.

The consistent things we hear almost daily from people who meet Jaden since he was born is, "He doesn't seem like he has Down Syndrome." or other's ask "He's so smart, so alert, does he have just a little Down Syndrome?" Now, we hear it from his pre-school teachers. Over and over people in the profession of working with children with special needs tell us they literally can't believe how "typical" Jaden is. They tell us daily how "on par" he is with other kids his age and in fact is doing many things earlier than he should be! Never has "typical" been such music to my ears. Jaden is breaking down stereotypes just by being himself, showing everyone he meets that Down Syndrome isn't a curse or hindrance. It isn't because it's bad to have Down Syndrome, it's because we all innately want our children to be as independent and healthy as possible. I am not trying to take away his Down Syndrome by giving him these protocols, I am trying to help his body and mind work together as seamlessly as possible. Parent's like me may be up for quite a bit of criticism from other parents who really feel that we're not just accepting our children as they are. I understand this, but it couldn't be further from the truth. If your child had diabetes, you get them treatment, or if they have trouble reading, you get them a tutor, or if your child gets sick, you give them antibiotics. It's the same thing here. I wouldn't be able to live with myself knowing I didn't follow my gut instincts for my son and that I wasn't doing everything within my power to allow him a life to the best of his capabilities. Does every parent reading this have to agree? Of course not. That isn't the point of writing this. I am just sharing my personal experience, which is obviously different from everyone Else's.

If you are interested in reading more about these therapies, check out:
changingmindsfoundation.com and when you're done there, check out this excerpt from the documentary they just made about Down Syndrome and Theresa Cody.
http://www.youtube.com:80/watch?v=WFKW7-DDzNo

Sarah Palin For VP?

I rarely post twice in one day but I feel compelled to comment today on what has just occurred. Senator McCain has just chosen Governor Sarah Palin to be his VP running mate! Unbelievable. I really wasn't sure where I was standing on who I would vote for. I like Obama, I believe Obama, and I seem to trust Obama and I really like his wife. However I don't really care for or trust the VP he chose, Biden. I've been having several discussions with my father regarding this lately. He's really for McCain and not really crazy about Obama. I'm somewhere in the middle. However today I really got thrown for a loop. I was getting ready to leave the house when I turned on CNN. I just happened to catch the acceptance speech being given by Palin.

Wow. Was I impressed. I had never even heard of her before, or so I thought. And then my phone started ringing off the hook. I must have had 10 different people call me to tell me that Sarah Palin had a baby with Down Syndrome and he was only 4 months old! What? 4 months old?! And, she had 4 other children, one of whom is going off to Iraq in a few days. Then I remembered, I had read about Sarah Palin several months ago on my DSTNI group (Down Syndrome Targeted Nutritional Intervention) and in my local DS support groups daily email. Her name was passed around when she gave birth as well known figures names usually are when they have a baby with Down Syndrome. It seems there are several people in government with children with Down Syndrome, 4 that I can name. Maybe you know of more.

Anyway, I listened to this beautiful woman speak, so poised, elegant, focused, calm, confident and warm. I instantly got excited. I started thinking about the possibilities. Could there really be a woman in office? Could this be the woman we've been waiting to see in the White House? I sure didn't want Hilary to be the one. I couldn't bare the thought of the Clintons being back in the White House again (I don't trust him at all). But Sarah Palin, hmmm. It really got me thinking. So I listened to her speech and listened to the commentaries and then went to go pick up the kids from school. I decided to read everything I could about her in the last few hours, and I am so impressed with what I have read. It really seems like she has morals, values and ethics that can't really be bought like most politicians. Could this sway my vote? Would I vote for McCain because of her? Possibly. I do like McCain's wife as well. Maybe I could vote for a man who chooses to surround himself with 2 very intelligent, powerful women.

I read several quotes given my Sarah Palin regarding the birth of her son Trig. It brought back my own thoughts, which I believe are completely universal. One of her comments said "What is normal anyway? Show me normal." I can't count how many times I've said this when discussing Jaden. We found out about Jaden after he was born, and even then the Dr's weren't sure so they had ordered blood tests, which they lost. I remember my Ob/Gyn discussing the possibility that Jaden might have DS the day I was going to be released from the hospital. I was all alone in the room, thinking he was going to talk to me about Jaden's circumcision, and instead needed to tell me the Dr's suspected he might have DS. He gently reminded me that I had "refused" an amnio. I then reminded him I didn't "refuse" anything. I wasn't going to terminate my baby regardless, so the amnio meant nothing to me. He then told me "Jaden" was a cute little guy and that he was healthy and looked great anyway.

3-1/2 years later I still have people aske me the million dollar question, "Did you know before he was born?" It's as if they are trying to confront their own issues with how they would accept the news. Knowing full well that it's impossible to know how you feel. I was one of them, before. I actually no longer talk to someone because I realized I had nothing in common with them when they "honestly" told me they would have aborted had they known before hand. To which I said, "Then you would have been in the 90% majority, and I have never been in the majority with anything, and would never want to be."

I often wonder how any Dr. could scare any mother or father into not wanting a baby with Down Syndrome. I used to think I was "pro-choice" and that "pro-lifer's" were radical extremists out to destroy women's liberties. Wow, was I naive. I now realize that I never understood what abortion meant. I never understood our lack of acceptance as a society. I never understood our need to create the impossibly "perfect" baby. I never understood that the medical world is weeding out all medical "imperfections" prenatally at the cost of thousands and thousands of lives every year. Pro-Choicers argue that abortion needs to remain legal or it will become unsafe and there will be unwanted babies all over. I have heard from Dr's who have performed abortions, there's a letter on my website written by a Dr. himself who describes what he saw in carrying out abortions. I am not only pro-life, I am pro-education, pro-support, pro-difference and pro-truth.

Thank god I never let a Dr. talk me in or out of anything nor would I. But millions of parents do, every year. If only they knew. If only they had faith in their own ability to unconditionally love their baby, no matter what. If only they trusted God and the cards they were being dealt. I'll never forget the mom who told me one day as she was staring at Jaden. "My last pregnancy was terminated because they told us he had 'really bad Down Syndrome'." I just kept quiet knowing there is no possible way to detect prenatally "really bad" Down Syndrome, but had heard this before from other mom's who had also terminated. It sure made the mom feel better in her decision I guess, to say that the baby would have been really bad off anyway. She then went on to tell me that her recently born son, was paralyzed on one side and they didn't know if he would ever walk or stand. She also said that she knew God was punishing her. But that in her Upper East Side Manhattan World, her son with Down Syndrome would never have been accepted and he would have had a horrible life. I just sat and listened to a mom who was confessing to a stranger her obvious guilt. She then commented on how cute Jaden was and how he didn't really look like he had Down Syndrome and that he seemed so "normal".

I only said this to her when she was finished. "Jaden is the epitome of perfection and I thank God every day for showing me how ignorant I was before he came along. Now I am constantly aware of just how much growing I have to do and how deserved we all are of life."

Kids With Down Syndrome Can Read Early!

Just thought I would update on Jaden's reading progress. It's quite phenominal how well Jaden is catching on to reading, especially at this young age. (he turns 4 in December)
We go on the website, Starfall.com and do the Alphabet. If you haven't been on this site, it's FANTASTIC! So great for all different learning levels, very visual and very fun. He LOVES it, plus he's getting really good with the mouse now. I can't believe how well he says all of the letters and sounds as well as repeats all of the words. His enunciation is almost perfect. He says his L's, S's, T's, R's etc. Like "Umbrella, Lyla, Horse". He now can sight read some words without picture prompts. I do alphabet picture cards, word cards, books and the computer with him every day. Children with Down Syndrome are visual learners and this is actually a great gift, not a disability what so ever. In fact, they are able to see it, learn it and remember it very easily, especially if it's stimulating to them. I am amazed at Jaden's ability to imitate and do tricks on command, he's always been good at this. When he was 6 months old I taught him to touch parts of his face just by watching me do it, and by repetition. I would say "Touch your mouth, eyes, nose" etc. and he would do it. No one could believe his talent for learning so quickly and remembering. He's been doing tricks for me every since, as you probably see in the video's!

As he gets older now, these skills just manifest more and more frequently. 2 days ago when I picked him up from school the teacher couldn't wait to tell me how he'd named all of his colors on the color blocks! Yesterday another teacher was working with him on the computer and could not wait to tell me how many letters he knew and how many words! She said "He's Reading! He's just amazing!"

I know that Jaden is doing well, however I really believe his abilities are all of our kids abilities. When we tap into "how" our child learns, we are able to customize their learning. He didn't know the word for "tree" the other day when I showed him the picture so instead he said, "outside, bird". So creative, don't you think!? Also, when he saw a girl making a face at him in a restaurant a few days ago, he just watched her as she was being silly. She was sticking her fingers in the outside corners of her mouth and stretching her lips apart. He just watched, but didn't imitate it back to her. A half hour later when the girl was leaving with her mom, they walked by us and Jaden looked up at us, stuck his fingers in the corners of his mouth and peeled his lips apart. He wasn't doing this at the girl though, he was showing us who this girl was and reminding us of what she was doing earlier. He didn't know her name, so this is how he identified her. So smart, so smart, our little guy. He misses nothing!

Jaden's Beginning To Read!


Ok, I've heard the stories about the "Super Genius" kids with Down Syndrome who start reading and recognizing words at the age of 3, (which is sooner than my typical, I think very bright daughter) but truly was a little skeptical. I've spoken to parents who have told me their child was reading at this early age, and have heard first hand accounts of where, when & how it took place, but still thought "I'll believe it when I see it", I admit it.

Until now. We've been working on letters and words for probably 1 year and a half, and have videos, flash cards, leap frog letter magnets, books, puzzles etc. Jaden has gotten fantastic at enunciating all of his letters and words really well, and I was beginning to think he was recognizing letters but wasn't quite sure. I know he loves all of these activities and loves being read to and trying to read. I aldo know when he watches certain shows, he repeats everything or even says things before they come on the show, but typically It's because I think he has memorized the song or words. Until now.
5 days ago, in Barnes & Noble, I was at the magazine rack sifting through some magazines. He was standing next to me saying letters out loud for several minutes until it had drowned into background noise. Finally I looked down at him and he had a magazine in front of him and he was trying to get my attention. "A", "N", "R", etc. was what Jaden kept saying over and over. He was saying the letters and pointing to them in the headline on the magazine. He kept looking up at me to see if I was going to praise him for his knowledge, but shock took over first. I quickly made him repeat what he had been saying to see if he was truly recognizing the letters. I said, "Jaden, where is the 'A'..." He then pointed to the A and said "A", then pointed to the N and said "N" etc. He was clearly reading all of the letters out loud and pointing to the right ones! I started yelling "You're reading, you're reading!" Until everyone sitting quietly started looking over and started clapping! Jaden was so excited, laughing and clapping back. His sister was so excited as well. What a moment, what a moment!

It's moments like this, that I realize how much I need to know he will be alright. Just when I think I'm completely confident in his abilities and future, I realize I'm not. I do have moments of fear and doubt, even though I don't let these moments take over, I still relish the times when he dispells any doubts I may be feeling. It is the reassurance of knowing he will read, he will talk, he will have a productive, fulfilling, exciting life. Do I need him to read now? Of course not. It's just knowing that he's "getting" it. He's really "getting" it. It is all sinking in. Priceless.

Fellow Parent's, There's Hope!


Well after 1 very long year into potty training we have finally made a breakthrough! Any parent of a child with DS or even a "typical" child who is late with potty training will totally relate to our experience, I'm sure. Jaden, who has blown away so many stereotypes since arriving in this world 3-1/2 years ago has had a tough go at potty training. For over a year now, he willingly would sit on the potty and do his business be it #1 or #2, but we always had to be the one to catch him or predict when it would be coming. As most busy, working, parents will know, this is NOT EASY!!! I have read the books, received the brochures and will readily admit it is totally our fault that Jaden isn't fully trained by now, however we just haven't been able to devote 2 steady weeks to charting, diagramming, documenting and writing everything he's drank, when, where, how, with timers etc. It's definitely made me feel like a bit of a failure. My own sister-in-law who works solely with autistic children has told me 100 times, all kids can be trained in a week, as long as you stick to the plan. Well, we haven't been able to stick to any plan. And now, with summer looming in, and Jaden not being able to return to his beloved preschool and advance to the next age group until he's potty trained, I was starting to get a bit anxious and desperate. Just the thought of Jaden being in diapers much longer is very depressing to me, because I know he's ready.

Somebody must have heard my cries, because just this week, on a consistent basis, Jaden has been coming up to me and saying "Mommy, pee pee" while grabbing his pullups and trying to pull them down. So I, dutifully have been running him into the bathroom, putting him on the toilet, praising him, making him laugh, etc. and low and behold he goes! Then he flushes, washes his hands and turns out the bathroom lights, all things he loves to do. He has been initiating this at least 3 times a day now, which isn't every time he goes, however it's always for poop, and sometimes for pee! I can't tell you how ecstatic I am. I really think the pull ups have made a difference, because I think they're much more uncomfortable for him, and he wants them off as soon as they're wet. He has been going off into another room by himself FOREVER to go potty in his diapers, or even creeping into the bathroom but still going in his diapers, but not anymore! So many stereotypes with DS, but many of our kids can be trained within a typical time frame, and Jaden is truly proof of this! If I can get it done with him, anyone can, trust me! Good luck all you parents out there struggling with this, I totally understand how you feel, and it will happen, hang in there.

Back From Hiatus

Well If anyone is still out there reading this blog or happens to stop by, I apologize for such a long break since my last entry. Obviously, so much has happened in the last 7 months, however all good! The only reason for my break was work, family, business, family, work, family, and work. I hope to be more regular in my entries again and also hope to be able to fit it into my schedule during the day. I miss reading all of my fellow friends blogs. I have so much to catch up on. In the time that I've been absent, one of my "blogging" friends published a BOOK, another few are pregnant again, some have even had more babies! Unbelievable what happens in such a short period of time. Congratulations and the most happiness to all of you!!!

Here's a quick update with Jaden, now 3-1/2 years old. He's been in a "typical" pre-school up until a month ago and was doing fabulously. The only problem is, he isn't "Fully" potty trained, and can't move up into the next class until he is. Developmentally he's ready to move on, except for this one little thing. He's 80% potty trained at home, but at school, he's not assertive about telling the teachers when he has to go. Unless they ask him regularly, he won't go on the potty. So we pulled him out of school and now have a wonderful woman come to the house who spends 3-4 hours a day with him. She is amazing. She takes him to the park, teaches him reading, writing, music etc. She's his friend and teacher and allows me to work. So, we're hoping he's potty trained soon. Once he is, we'll put him back in school.

I sometimes can't believe the stereotypes with Down Syndrome. The one that doesn't seep to apply to Jaden lately that much is "They're such sweet, lovable, caring people". Yes this is probably true most of the time, however, Jaden would better be described with different adjetives. I would be more quick to say he is feisty, disobedient, rebellious, rambunctious, curious, funny, happy, angry, sad, loud, talkative, and wild! "Sweet, lovable, caring" would be left for other times in describing him. So we have a wild 3 year old at home who is probably like most other 3 year olds and he's doing amazing! His favorite thing to do now is break dance. It's very funny, I'll upload a video soon. When we say "Jaden, break dance", he gets down on the floor and spins around, and break dances. More updates, soon and I look forward to hearing from you, if you're still out there!

Couple With DS Gets Married

So much to talk about today. First up, a couple in Tennessee is getting married, and they just so happen to both have Down Syndrome. Read all about it here. This is not that surprising considering what our kids can do now, yet it is still great to see. What continues to surprise me is that every time I read an article about a person with DS accomplishing something "normal" the article always has to include the stereotypical, regurgitated so called facts about DS. Why can't we just read an article that states the accomplishments of the individual without pre-empting it with outdated statistics, or stories of institutions, etc. Yes, I understand we have come a long way, but when are Journalists going to stop perpetuating stereotypes in their story telling?


Next up for sharing, we went to Jaden's School's Open House last night. It was so cute that I could barely control myself. The teachers had put together a beautiful video of all the children doing different activities throughout the day. They would stop the video to talk about what the kids were doing coming up in the next scene. It was incredibly special. The funny part was, Jaden was in every single frame. There was no part of the video that didn't didn't show Jaden doing something. I know they favor him a bit, but it really became abundantly clear in the video how much "On Air" time Jaden got! We just love his teacher's, all 6 of them! The amazing part is, there are only 12 kids in his class! There is nothing that Jaden isn't doing that the other kids are doing. His teachers keep stressing to us that he is just like every other child in the class and is doing everything! We're so proud of our little guy. The Big scrape on Jaden's nose happened the day before picture day! So his school pictures should be cute this year!

Next Up, please read this article about how HALF of ALL Lipsticks have lead in them! This isn't surprising to me, because I have been reading about this for years, but many women have no idea that this occurs. They just assume that the beauty industry is looking out for our safety. On the Contrary! It doesn't matter how expensive your lipstick, eyeshadow, or foundation is! Unless it's 100% Natural and organic, it will have chemicals in it! The Beauty industry is a SELF-REGULATED Industry! This means they can put whatever they want in their products! Women are absorbing more than 200 chemicals a day through the skin. This includes SPF products that you are lead to believe are protecting you from skin cancer, this is also completely false marketing. The only thing you should put on your skin for sun protection is an all natural zinc oxide product, which will give you all the protection you need. The best place to look up the safety of your products in on the EWG.Org website, here the direct link to look up your products.

p.s. This is a great site to bookmark.

Applied Kineseology For Down Syndrome

Being the big research nerd that I am, I subscribe to some pretty varied periodicals. It would be hard to figure out all of my interests if you were to see all of the different reading material I go to bed with each night. From Business Weekly, to Entrepreneur, to Oprah (the subscription was a gift) to The Townsend Letter (A magazine for Alternative Medicine for Practitioners). Not all on the same night! Granted, there are plenty of times I don't understand every word I'm reading in the medical periodicals, but then again I'm sure the "professionals" don't understand everything they're reading either, (at least that's how I make myself feel better.) I read an article that really opened my eyes up to a technique called "Applied Kineseology". I will post the link to the article here, and if you don't feel like reading through the whole thing I highly recommend printing it out for future reference. The whole article is focused on using this treatment for children with Down Syndrome, and apparently the sooner you start this type of therapy, the more profound the results are! I am going to be seeking out the treatment for Jaden in the next month or so. I have actually had Jaden's therapists recommend this because they know kids that have benefited enormously from the treatments. I'm very excited to start, and I might have it for myself! Happy reading!

An Amazing Article

Please read This Amazing Article! It's fantastic.

Please Keep Signing The Petition

I heard back from Senator Brownback's Office yesterday, and they are VERY supportive of what We are doing! Please, keep passing on the Petition, it matters! Send it to everyone you know! I have some exciting things that I am going to keep doing to get the word out about this issue. You can all contact your State Senator's Offices to let them know that you want the Prenatally Diagnosed Condition Act Passed! The more Senators on board, the better. Senator Brownback, wants to get this Bill Passed! I have some fantastic ideas about things we can do, where we live, to really make a difference! I am off to do a Jewelry Show now, I'll check back later this afternoon. We're almost up to 100 signatures! Let's turn that into 1,000 signatures! This is not a Pro-Choice or Pro-Life issue, this is an Issue about Education and Not Withholding Information!

My Petition

UPDATE!!! THANK YOU EVERYONE for Signing. KEEP SIGNING, KEEP PASSING THIS ON! UP TO 68 SIGNATURES AS OF 7PM EASTERN, Pass this on to Every Parent You Know! Senator Brownback's Office Called me back today. They informed me that they are aware of my Blog, took my information and are looking forward to receiving this petition! They also stated that The Prenatally Diagnosed Condition Act is a top Priority and Will Be Reintroduced very soon! Our Pressure Will Work. Please Sign This Official Petition For Changing The Way Doctors Deliver a Diagnosis to New and Expecting Parents. Go Here To Sign the Offical Petition.

Please Pass this On To Every Parent You Know who Is Concerned with the Issue of A Modern Day Eugenics Project. Together, We WILL change this System! WE CAN ALL MAKE A DIFFERENCE!

Thank you.

A Message On Selectively Aborting Babies With Down Syndrome

Please Read my Post from January if You Are Interested. I am going to be sending this to As many publications as possible.

Down Syndrome Pamphlet Finished

I first want tell you, Congratulations on the impending or new arrival of your beautiful baby! You may be feeling more scared and confused right now, than you ever have in your life, and that is something I completely understand. You may even feel like congratulations don't really feel right because of the news you have just received. But trust me, you deserve only congratulations! Hopefully this letter I am writing to you, will help you see this more clearly.

I decided to write this letter to you, because even though I don’t know you, in many ways I do know you. You see, all the feelings you may be feeling right now, are the same exact feelings I, and hundreds of thousands, if not millions, of other parents around the world have felt also. The baby you are about to have, or already have, is going to fill your life with more joy and happiness than you would have ever dreamed imaginable. Even though it may not seem possible at this very moment, trust me, you will see.

I first want to tell you how perfect your baby actually is. What ever the Doctors may be telling you about possible “problems” or “Issues” or “Life Long Struggles”, I want to tell you something else. The First thing is, Your Baby is PERFECTION in every sense of the word. Your Baby doesn’t have a disease, Your baby isn’t a Mistake, Your baby isn’t a Freak of Nature.
Your Baby is Intelligent, in so many more ways than an IQ test could ever measure. Your Baby isn’t going to Ruin your life or your families. Your baby is going to be loved by everyone who meets him. Your baby is going to be welcomed with open, loving arms in this world. Your baby will accomplish everything you wish for him, just like every other baby. Your baby is “Normal”, your baby is Beautiful, Your baby will do Everything any other baby can do, maybe it will take a little longer, maybe it won't. Your baby will love you, challenge you, anger you, laugh with you, test you, play with you, and do practically everything you can imagine for him.

Your baby will not slow you down or burden your family. Your baby will make you wonder every day, what you were so afraid of? Your baby will make you want to run right back into your Doctor’s Office and ask them why they told you such negative, depressing statistics. Your baby will make you want to educate the world about him. Your baby will turn you into a person you never knew existed. Your baby will remind you every day of the all of the love in the world because of all of the love he will attract. Your baby will surprise you at how intelligent, independent, stubborn, funny, and capable he really is. Your baby will re-teach you everything you thought you had figured out about life. Your baby will make you want to be a better person. Your baby will make you question why you ever doubted that you wanted him. Your baby will hug you, kiss you, love you and win over every single member of your family and extended family within minutes. Your baby will give you a purpose that none of your other children did. Your baby will want to make you do what I am doing right now, scream out to the world that he is perfectly fine, he is ok, he will live a long healthy life, he will do everything you wish for him, he hasn't ruined your life or anyone else's!

It's important to remember, at this emotional time, that every single baby born is going to have the life God has planned for them. That means that, all of our pre-conceived notions about what we think a "perfect" child is or should be, really doesn't matter. After all, none of us want to have the sick child, the fat child, the skinny child, the child with the big nose, big ears, lazy eye, bad hearing, bad eyesight, un-coordinated, slow, depressed, hyper, the child that all the kids will make fun of. However, like it or not, these children make up our diverse population and will continue to until the end of time. For it is up to us, as parents to teach acceptance to all of our children, so that they go into the world and don't see other's as strange or different. It is our responsibility to teach our children that we are beautiful in our differences, unique in our differences, and that all of has enormous capabilities. When we don't teach our children that, they are the ones that make fun of the kids they see as "different". We teach our children this, by terminating life that is deemed less than perfect.

Every child born will have the life that their parents allow them and demonstrate to them. And if at this very moment, you are thinking that, "I can't handle a kid with "special needs", or a child with "illnesses", or a child with "Problems", I need to remind you to look around this world and realize that every child has a purpose, just like yours. Talk to teachers who work with children every day, they will be the first to tell you that ALL CHILDREN have SPECIAL NEEDS!!!! Speak to some parents who have had trying times with their "typical" children. The typical child who rebels and goes on to do drugs, or drink or steal. Maybe it's their "typical" child who goes on to develop an illness that requires hospital stays. Maybe it's their "typical" child who needs a little therapy to learn how to speak more clearly. Then ask any of them, if the challenges they face with their "typical" children if this is the future they had seen for their child? Ask the parents of "typical" children if they regret having their child, or if they love them any less. Ask these parents, if they would have chosen abortion because if they could have seen into the future and all of the difficulties that lie ahead. Would they ever have thought they had the strength to handle all of these problems and struggles and "burden" that their children have turned out to be at times? Probably most parents would say "Of course not. I would never have terminated even knowing what I know now." They also would probably say that they never thought they would be able to handle these difficulties, but they found that not only can they, it's made them stronger, smarter, more accepting and a better person in the end!

Every single one of us is born with a purpose, a soul, a heart, a mind and a life. Every single one of has strengths and weaknesses. Some of our weaknesses are for all to see, and some of us we can cleverly hide. Some of our strengths are for all to see, and some we can cleverly hide. Every single one of us is perfect in our Imperfections. Every single one of us will have things that slow us down, and things that speed us up. Our development all has to do with our parents and environment. For we all know people who had “difficult, challenging” childhood's, and those who had “supportive, easier” childhood's. We all know people who get sick, get injured or have lives that ended short. We all know people who unfortunately develop disease or who have illnesses that slow them down, or cause them struggle. We all know people with physical challenges, mental challenges, emotional challenges and life challenges. We all know people who are on medication. We all know people who don’t live healthy lives. We all know people who are self-destructive. We all know people with addictions. Nobody’s future is determined EVER by a Doctor or Parent or Psychic. Our futures are determined by something greater than ourselves and by our environment and will. Even though The medical world gets a little righteous and judgmental and they have their ideas of perfection, and they like to tell people what they can and can not handle. I will gently remind you that we are all guilty of this. Even though the Medical world serves an invaluable purpose in this world, they do not have all of the answers, the right answers, and very often they have no answers. For the medical world can not answer many things, like love, determination, will and fate.

We all have images in our head of incapacitated babies or children, or babies that are deformed, or babies that are sick, or babies that struggle or babies that have difficult beginnings or lives. We all see images and stories of poverty, killing, raping, abuse, neglect, disease of our children. We all wonder why is GOD so cruel as to allow children all over the world and right here in the U.S., to suffer the way they do. After all, all you need to do is visit an Orphanage in Russia, 20 years after Chernobyl to see babies left for dead in Institutions because a simple heart procedure performed in the US which could easily assure them a long, healthy life, is unavailable to them there. All you need to do is see what is going on in Africa, where millions of children die each year from starvation and disease. What about Afghanistan, where a simple cold, left untreated, can easily kill a child. Where only a small percentage of babies are born healthy and alive. It goes on and on. I only pose these thoughts because, I want you to try and put into perspective, at this seemingly emotional and difficult time, One thing: The baby you have, is your baby, your intention, your will, your want and your life. You created a perfect human being. Perfection is all Perception. What is perfect to me, is most certainly not Perfect to you, and vice a versa. However, you love your baby more than you know, and your fears and doubts will wash away quickly as you hold, love, interact, nurse, play and kiss your precious gift. You are not a saint, you are not a charity worker, you are not perfect, you are not a martyr, however you are a parent who created a child, who will love you forever, and whom you will thank God everyday for, for the rest of your life.

I know. My son, now 2-1/2, born December 16, 2004, is everything my 8 Year old daughter is to me. The only difference is, he’s a boy. All boy! He has a huge fan club filled with friends and relatives. He was embraced and accepted by every single one of our friends and family members. He was loved in the Hospital when he was born, and it never stopped, it just grew exponentially. He is wild, mischievous, into everything, loud, rambunctious, funny, talkative, and playful. He has the best sense of humor you’ve ever seen on a child this young, he is so smart, he doesn’t miss a thing, he has to be part of everything. He runs, rides his bike, plays his drums (big mistake Grandma & Grandpa), fights and plays with his sister, does things he knows he shouldn't, doesn’t always listen, loves to watch his videos, tries to work on the computer with me, plays the piano, tries to steal his sisters game boy, talks on the phone, and loves to do tricks on demand to make us laugh. Did I mention how much he talks? Jaden was never a burden. Jaden has never slowed us down. We both have our own businesses, and Jaden has never kept us from working. I'm still waiting for a "special needs" child to show up, because all I have is a beautiful, healthy, active, wild boy!

Jaden starts preschool in a few weeks, a regular preschool, and he is very excited. All of the schools we looked at, over 10, not only welcomed Jaden with open, loving arms, they could have cared less that he has Down Syndrome, in fact, sometimes people have no clue! They all said to us the same thing when we were interviewing them, “All kids have Special Needs, Trust US!” They all said, Jaden would fit in beautifully and would be just fine. I know that, but I’m still a mom!

Jaden is happy, healthy, outgoing, intelligent, and a joy. Does he sound like a mistake to you? Does it sound like he has a disease? Does he sound like he is suffering or making us suffer? Does he sound unusual for having Down Syndrome? Maybe because of the Stereotypical, outdated, inaccurate information that the Medical Profession still passes around, but trust me, he isn’t unusual. There are plenty of kids, just like Jaden who read when they’re 3, who walk when they’re 18 months, who talk, who are over achievers, just like all of the other “annoying” overachiever kids in this world. Does it mean your child will be exactly like Jaden? No, but you will be just as proud if not more!

Every single parent who has a baby with Down Syndrome, wishes the same thing, which is: That they had a parent to talk to when they heard the news of the diagnosis. A baby to see, to see that everything was going to be ok. That it isn’t like 50 years ago. That the world loves, accepts and embraces kids with Down Syndrome. That the School Systems includes our kids. That people in general, can’t get enough of them. That they very often become the star of the class and school. That their lives are as endlessly possible as our own. That they’re not going to be hindered and held back. That they will be able drive, read, write, go to school, have friends, girlfriends. That they can get married, move out, live independently. We all wish we could have heard this, so that we would have known the Reality of Having this baby. So it would have washed away the selfish fears of Not having this baby.

We all wish we would have known right away about all of the exciting research that is going on with Down Syndrome. Did you know, that at Stanford University, they have a whole building devoted solely to the Research and Treatment of Down Syndrome. They truly believe that in the next few years, they will have treatments which will allow many delays that a child may have, to be a thing of the past! There are treatments right now that are showing amazing promise. There are many links between the research they are doing on Alzheimers and Down Syndrme right now which are showing researchers that Down Syndrome is a treatable condition and they are extremely excited about this! Did you know that there are so many Early Intervention Services from Health to Speech, Physical etc, that help in every way you can imagine? Did you know that there are numerous support organizations that are here to give you any and all information you may need? Did you know that there are Nutritional Supplementation Programs that can greatly help your child's health?

I am not an extremist or part of a religious group. I am not part of a Pro-Life or Pro-Choice movement. However, I am a mom, who knows lots of moms, who will tell you that your love will be there for your baby and your love will outweigh everything else. When you look into your babies eyes you will instantly know what I am saying is true. This is the one thing the medical community continually undermines and forgets. That a Mothers/Fathers love for their child is so innate and powerful, that it takes over anything else that may get in the way. Don't doubt for a second your own ability to love and care for your baby, trust me, your love will be there stronger than you ever knew.

The world only changes one person at a time. Not one day goes by, when we leave the house with Jaden that someone doesn’t tell us how gorgeous he is, or how beautiful his big brown eyes are, or how long his eye lashes are, or how beautiful his smile is. Not one day! You will see. The same thing will happen to you. You will be more proud of your baby than any other baby you have or will have. Why? Because he has so many inaccurate, outdated, regurgitated stereotypes stacked up against him, and for this reason alone, your pride will lead your life.

No child’s fate is ever predetermined by us, or Doctors. Remember that they can not pre-natally test for Autism (1 in 150) kids, or Cerebral Palsy, or cancer, or allergies, or migraines, or depression, or bipolar disorders, or addictions, or add, or learning delays, and thousands of other possible "mistakes". My point being that, when ever we decide to have a child, we are all thrown into the same lottery. And by virtue of having our child, we all automatically win.

I don’t know you personally, but I care and I am here for you, along with hundreds of thousands of other parents. The feelings you have are completely Universal, in a way that binds us together in a Community so powerful and strong that it will make you feel loved and safe. A Community you may not want to be a part of right now, but one you will soon feel proud of to know. I hope you will read this letter and wonder, why you were so scared. Trust me, if you are at this moment, you won’t be for long! I wish I could be there to tell you these things in person, or to hold your hand or hug you. I wish I could be there to let you talk to my son, or to hold him. For if I could do that, you would see that everything I am saying is from my heart and true. I wish you only the best, a life filled with love and joy and hope and pride! }

Putting The Person Before The Diagnosis

Me and My Babies

Shortly after Jaden was born, I wrote many essays, yet to be published, with the intention of sending them off to every Doctor's office and newspaper across the country. To let everyone in the medical world know that Jaden was so perfect, he was beyond perfect, and why was this little life so controversial to everyone!? Of course the older and more perfect ( I know, you can't be MORE perfect), he became, I would revise my essays. The only reason I never sent them off was because, they weren't quite concise enough, so I would start another one, each one sounding a little more detailed than the last. I still hope to, within the next few months, Start sending them off to the Newspapers and Parenting Magazines. The re-occurring theme in all of my writings was the analogy I kept using which was this: That if each and every one of us was introduced with a Diagnosis before our name, imagine the world of prejudices we would encounter.

"That's Sam, he's got Diabetes and High Blood Pressure, he won't be able to do too much physical work today." "That's Peter, he has Pre-Cancerous lesions and gall stones." "Meet Tom, He's got Arthritis, Asthma, and clogged arteries." "That's Jan, she's got ADHD and Hypoglycemia." "That's Susan, She's got Cancer and Heart disease." "That's Michelle, she has Uterine Fibroids and get's Really Bad monthly Migraines."

Imagine a world, where all of us were introduced by a diagnosis first! I corrected a teacher the other day who had informed us she had another Downs Syndrome child at her school, where I replied, "It's better to say, A Child with Down Syndrome, So you don't put the Label before the child". I then went on to give her a few of my Analogies, to which she appreciated the information and said she had never heard it put that way. I think when you use opportunities to gently inform someone of other ways of saying things, and let them know how powerful their language really is, it really can be eye opening.

Preschools & Down Syndrome

Jaden's New Bike

First off, We've started actively seeking out a Pre-School for our little genius Jaden! Something I never thought I would be quite ready for, but I'm happy to say I am! The most important thing is, Jaden is ready! We've noticed that he gets quite bored now, and loves constant activities and structure. He seems to get bored and restless and whinny much more easily now, because he is looking for more and more to stimulate him! It's very funny because he will wander through the whole house, first with all his toys down stairs, then the piano, then the bike, then the play set outside, then the ball and bat, then upstairs to his books and toys upstairs, onto his drum set, then his sister's room to sing on her karaoke machine then back downstairs. That's a good hour or two for play, but after that, he wants more, different, structured activities.

And I don't know about all of you, But I work from home, and the Word "work" has slowly faded out of the equation now. So, I am very excited to have him be part of a group, playing, interacting, learning, structured, etc. We checked out 4 different schools Friday.

The part that I was really dreading was informing the people at these schools about his "diagnosis" and having them tell me "We're not prepared to handle kids with 'special needs'." Or something similar sounding. I was all prepared to call in our local Advocates from our Support Organizations to try and help me get Jaden into our school of choice. I was all prepared for any fight I was going to have. And low and behold, I was certainly in for a surprise. Not only did NONE of the schools flinch at the fact that Jaden had DS, they practically embraced it! Every single school responded to my inquiry about how they handled kids with "special needs", with "All Kids have Special Needs, Trust Us!"
Mother's Day Breakfast!

It was so eye opening, and astonishing to me. Every school was so warm and loving with Jaden, every teacher that saw him wanted to hug him and give him attention. Teachers from other classes who saw us walking by, would come out to greet Jaden. I was so pleasantly surprised, all my fears and doubts immediately washed away. Not only would every school love to have Jaden, they all said that he would fit in beautifully! Of course every class room we went into, he jumped right in, playing with the other kids immediately, joining in, saying hi, saying bye bye. I was so proud of him. Now that he can eat by himself, and he's in the middle of potty training, I feel very confident that he will just blossom in school!

It's at times like this when I feel like running back to the Hospital where he was born, when the doctor's delivered news of his diagnosis like they were giving a Eulogy, to tell them, "It's Ok, It's Alright, The World Loves Jaden, He Loves the World, He is going to have a Beautiful Life!"

And He really is!

16 Year Old Writes About Her Amazing Sister

I came across this Website today. Read this story a 16 year old girl wrote about her younger sister who has an extra "1". Also, scroll down and click on the Montage another mom made for her daughter. Very positive and uplifting!

http://timesonline.typepad.com/india_knight/downs_syndrome/index.html

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