31 for 21: Girl with Down Syndrome Plays the Piano

This came through on one of the DS listservs I'm on and I thought I would share it.

This mom, Daniela Clapp, is a piano teacher and she has been working with her daughter to teach her how to play the piano.






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31 for 21: A New Vitamin Formula for DS

A couple months ago someone on the Einstein-syndrome list asked about a new form of TNI which they had recently found called New Downs. It is based in Canada and developed by a naturopath originally for her son with Down syndrome.

Here is a video about Sejal Parikh-Shah (the developer of New Downs) and New Downs:



Of course, I had to research it to see what all it had in it. The ingredients in New Downs are below:

Vitamin A and carotenoids
Vitamins B1, B2, B3, B5, B6, B12, biotin, choline and folinic acid
Vitamin C
Vitamin D
Vitamin E
CoQ10
Iron
Copper
Manganese & Molybdenum
Selenium
Zinc
Iodine
Calcium
Chromium
Magnesium
Betaine HCl
Bromelain
Glutamine
Taurine
Tyrosine
Methionine, Cysteine, Ornitine
Proline
Serine
Alpha-ketoglutaric acid
Carnitine
Lipoic acid
Glutathione
TMG
DHA/EPA

 Overall, it doesn't look too bad. But, when looking closer at the ingredients there are several problems.

I would be extremely skeptical of having iron in the formula. While Iron is very important, it's kind of a double-edged sword. Too much iron causes increased free radicals, especially the hydroxyl radical, which children with Down syndrome have a hard time dealing with as it is. If a child is on the lower end of Iron, then it would be beneficial. But, I would not want it in a standard formula.

There is no way, I would supplement with Cooper. It's been shown in many studies that Copper is typically high in DS. This is due to the overexpression of the Cu/Zn Superoxide Dismutase gene. High copper equals metal deposits in the brain which is not good.

Cysteine is also not good and something I would not supplement at all. This is another thing which has been shown in many studies to be high (typically) in Down syndrome. This is due to the overexpressed CBS
(CystathioneBetaSynthase) gene causing a messed up SAM cycle.

 The above is a quick synopsis of the problems I see with New Downs. But, I went ahead and emailed the doctor who developed this to ask her a few questions as to why she has these ingredients in it. I will quote all the emails below:

My first email to her:

 Dear Dr. Parikh-Shah,

I am the sister to a wonderful little boy with Down syndrome. Your vitamin formula for DS, New Downs was recently posted on a DS listserv which I’m on. Being the research queen that I am, I of course had to look into it more. My brother currently takes Nutrivene-D and has since he was 8 months old (he’s 6 ½ yrs old now).

I’ve done a lot of research on Down syndrome nutrition & biochemistry for the past 6 years (which you can see on my blog & site links below). This has raised some questions for me on New Downs and I thought it would be good to ask you.

Do you do routine testing, specifically for copper, cysteine & iron? If I may ask, why do you have copper, cysteine & iron in the formula?

I only ask these questions, because of research I have done. Due to the Cu/Zn Superoxide Dismutase gene which is overexpressed, copper is typically high in people with DS. And, as you probably know, extra metals deposit in the brain, which can then lead to Alzheimer’s Disease. So, this is why I question the copper. As far as the cysteine goes, the overexpressed CystathioneBetaSynthase (CBS) gene causes excess cysteine in the body. This, can in turn cause increased oxidative stress, which we know is not good :). And the iron, I question, because it is such a touchy metal. Iron is SO important for life, but it is also extremely dangerous. Especially because if there is excess iron it increases the hydroxyl radical, which is already in overabundance. That creates even more free radicals, which cause oxidative damage & stress.

I am emailing since I’m very curious about your position. Don’t take this email wrong at all, as I’m always open to hearing anything :). I look forward to hearing back from you and corresponding more!

Her response:

Hello Qadoshyah,

Your brother is very lucky to have a sister who is very interested in his wellbeing.

The New Downs formula is for kids who are still developing.  I'll start with iron, even though it can act as a oxidant, iron is very important for growth.  Many kids tend to be anemic.  Many kids with DS, due to their limited diets, do not consume adequate amounts of Fe.  Fe can be tested via routine blood testing (CBC & ferritin).  Copper is also necessary for Fe utilization and is a very important nutrient for phase 1 and 2 liver detoxification pathways.  Zn is added to New Downs for growth, liver detoxification and balance the Cu.

Cysteine is necessary for liver detoxification pathways and glutathione regeneration.

If you have any other questions, do not hesitate to contact me.

Sejal Parikh-Shah B.Sc., N.D., LAc.
416-720-9670
drsejal@newdowns.com

Because the answer was pretty general, I decided to write back with further questions,

Hi Sejal,

Thanks for the reply and explanation! I have a few more questions for you.

I can understand your reasoning with the iron. I prefer just to test for iron and only give extra if there is a necessity for it. But, that’s just personal preference :).

I completely understand why you would include those supplements in the formula, because of their interactions with each other. But, because people with Down syndrome have many different metabolic and biochemical pathways in their body, there are many processes which function differently. And therefore, they may not need certain things that the general population without DS needs when supplementing.

In regards to Copper, there are several studies which show that it is increased in people with Down syndrome (here are just two examples: http://bit.ly/qpR0JD & http://bit.ly/ob3TDj). So, because of this, their bodies already have enough copper to deal with, but not enough zinc. So, why would you recommend giving more copper?

In regards to Cysteine, because it has also been found to be high in Down syndrome (here’s one example: http://bit.ly/n5lXJU), due to the overexpressed CBS gene. Why would you recommend supplementing more of this, when their body already has too much (typically) and cannot compensate with the proper amount of Glutathione?

Thanks again for the response and I look forward to hearing from you more!

To the above questions, I never received an answer. I was really wondering how she would reply to it, but I guess she decided not to reply at all.

Overall, I would not recommend New Downs for people with Down Syndrome. To me, it seems like just a "glorified" regular multivitamin. If you are going to have so many of the above things which are very questionable in DS in a "TNI" sort of formula, just give a general multivitamin.




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31 for 21: Thoughts on Using Nutrivene

A couple weeks ago someone (an anonymous person) left a comment on this blog post.

I saw their comment and hesitated publishing it, but I thought it would be worthy of addressing. So, to the anonymous person who left this comment, I hope this helps clears some things up.

My wife and I tried Nutrivene for quite a few years with our daughter with Ds. We used to visit with Dr Leichtman and would use the Nutrivene religiously. However, we had to take her off of the Nutrivene due to her being diagnosed through Stanford with Kawasaki disease. After being off of the Nutrivene, we see that all of her blood tests come back looking the same, except not so much elevation in excessive vitamin levels. Her growth still remains normal and she is progressing in leaps and bounds due to working with her daily at home and given speech therapy. She is mainstreamed in a 1st grade class with no aid. She's doing great! We were warned by most of our Dr's that it might not be beneficial and may be even harmful to her with those levels of vitamins, but we still tried it for quite a while. After doing more research, it looks like the medical community is on the same page with those Dr's, but those with an interest in Nurtivene and similar supplements still sing their praises. I'm not saying to stop using it, but do some unbiased homework if you are thinking of putting your child on any supplement and make an informed decision from your own research.

I have a few comments to make on this and I will list them all out here.

First off, I'm sorry to see the little girl had to be taken off of Nutrivene and I'm sorry to see she was diagnosed with Kawasaki Disease.

What I really want to address though is some of the statements regarding Nutrivene.

This little girl may very well have okay blood levels right now and may be progressing great right at the moment. But, what a lot of people don't seem to understand, is that the "bad effects" of the extra 21st chromosome in Down syndrome, causes problems which are mainly seen down the road in the teen-adult years. So, while the child may be doing well in her childhood years, she is very likely to have a lot of problems as she gets older. Or, if anything, early onset Alzheimer's.

The way I view it is, that research shows what bad processes, overexpressions, nutrient lacks, etc, the additional chromosome causes. So, I am going to do all I can to try to combat the problems that are present in the body of a person with Down syndrome. I am going to give something like Nutrivene to my brother in the hopes that he will not get early onset Alzheimer's, leukemia, dementia, excessive neuronal loss, etc. I can't reverse all the bad processes that the extra chromosome causes, but I am going to "target" the areas that research has shown can be targeted.

It's no surprise to me that the person who left this comment was warned by most of their doctors not to give Nutrivene. That shouldn't be a surprise. The general medical establishment does not believe that something like targeted nutritional intervention will do any good for someone with DS. The question I ask to that is, why do you recommend a multivitamin that is targeted for the general population? Why is it so unfathomable to have a multivitamin (which is all that Nutrivene is) that is targeted for the population with Down syndrome? It shouldn't be any big deal, but it is to many doctors and I don't get why. After all, people with DS have a very different genetic make up than the general population and therefore have different needs. There is research to show that vitamins are good for the general population, so why not look at the research which shows that certain or extra vitamins are good for the population with Down syndrome.

Another statement this person said in their comment was that something like Nutrivene "may be even harmful to her with those levels of vitamins." I've heard this statement a lot over the years. But, I have not seen one single bit of evidence to show that the dosages of vitamins in Nutrivene (or MSB Plus, etc) could cause any damage. If these levels of vitamins were so harmful, there would be more reports about it. But, the truth of the matter is, there are thousands of families using targeted nutritional intervention with their child with lots of success. If someone has proof of the supposed "harmfulness" of Nutrivene, I'd be glad to see it. Thus far, I have not seen anything, other than people saying their doctor told them it may be harmful.

Another thing that I wanted to make very clear from this commenter, was the statement where they say "...those with an interest in Nurtivene and similar supplements still sing their praises." Quite frankly, I was shocked by that statement. This person claims to have done research, but I must say, they did not do very good research. To say that those who have an "interest" in Nutrivene are the ones promoting it, is bogus. Dr. Leichtman does not benefit from any sales of Nutrivene. My family does not receive anything from Nutrivene, International Nutrition, etc to encourage us to promote TNI. Nutrivene does not do any affiliate programs, so from what I know, there is no one who is being "paid-off" (for lack of a better term) by Nutrivene to promote TNI.

We use TNI and encourage others to use it, because I know it works. I know what research shows and I don't want my brother to become another statistic. Out of love for my brother, and other individuals with Down syndrome, I encourage the use of TNI. Dr. Leichtman promotes TNI, because he has seen the tremendous benefits it gives to people with DS.

I agree that people who are looking into using Nutrivene or any TNI, should do research and do their homework. Look at both sides of the issue - those who are against it and those who promote it. But, do so with open eyes. Look at the research and what it shows. Look at the thousands of people who are using TNI with amazing results. What do you have to lose (except dollars)? You have the potential to gain a lot, because of the help it may give your child. That's the conclusion we came to when we first started using Nutrivene. And I am so thankful that we tried it, because it changed O's life.



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31 for 21: Together

There are many things, some of which are small things, that O does which adds such a fun aspect to life. They are part of the blessing of having a child with Down syndrome.

O adds many different blessings to our life. Things that we take for granted, he is thrilled about. Things that may not be that exciting, like an every day chore, are always an exciting task. It's always good to be thankful for everything and joyful about things in life. O is a good reminder of that, because he is excited about so much.

Being in a large family, not everyone is doing everything together. If someone has errands to run in town, just a couple people may head to town. If someone is going on a walk or a run, just a couple may go on a run, etc. Whenever we do something where a lot of us are together, it's very exciting for O. And it makes it even neater that we are all doing it together.

A couple days ago just a few of us had to go to town, but once a few more things came up, several more people had things to do in town. So, it ended up being my mom, me, O and 4 others headed to town. We were all getting ready to go to town - brushing hair, changing clothes, getting shoes on, etc - when O found out that his 3 oldest sisters were going to town with him and mom, as well as his twin sister and one other sister.

Because O always likes to verify things to make sure he understands what is going on, he had to ask some questions. He stood there and asked "Da?" (which is what he calls me), I replied with "Yes", he then asked "Ghee?" (what he calls Ez), I said "Yes", He asked, "Seeya" (what he calls S), and I again replied with "Yes." He grabbed me and gave me a big hug while letting out an excited laugh and jumping up and down. It was so cute to see!

He does stuff like the above frequently when we're going outside to do chores, make something in the kitchen, etc. It's so fun to see and puts a smile on all of our faces :)!




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31 for 21: Team Makes Play for Down Syndrome Awareness

Team Makes Play for Down Syndrome Awareness Month

It was the fourth quarter and the Plainedge Bobcats football team was facing off against the Bethpage Eagles at John H. West Elementary School when 12-year-old Michael DiMarco ran the ball in for an 8-0 victory on Sunday.

While this scene could have played out in any peewee football matchup on a host of school fields across Long Island on any given Sunday, there was one detail that really got parents in the bleachers on their feet and cheering: DiMarco was making a guest appearance as a running back for just that one play for Down Syndrome Awareness Month.

DiMarco, wearing a red No. 48 Bobcats jersey specially made for him the night before, is a child with the genetic, chromosomal disorder. The Eagles, like the Bobcats, had been undefeated so far this season yet celebrated alongside DiMarco after letting him score.

“For the kids on the team to do something for someone like that made the whole day really special,” DiMarco’s father, Vincent, said after the game.

One in every 691 babies is born with Down syndrome and there are more than 400,000 people living with Down syndrome in the US, according to the National Down Syndrome Society.

Mikey, as his fans affectionately call him, regularly watches his 9-year-old brother, Vincent Jr., practice his drills as a defensive tackle after school where he is in 4th grade. This Sunday, little Vinny stood in as quarterback for the last play of the game when he handed off the ball to his big brother. The Bobcats scored a safety earlier in the game.

“We gave him the game ball,” John Petrucci, the Bobcats’ head coach, later told the Press from the sidelines. “He’ll have a smile on his face for the rest of his life.”



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31 for 21: Wordless Wednesday "Counting Down The Days"

Counting down the days until Granny arrives....

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31 for 21: Expectations

I thought I would share a few articles from our book over the course of the month. One article in the first section of the book is written by Jenny Marrs. She's the mom of a teenage boy with DS. She has done a lot of work for kids with DS, but especially her son and pushing to his highest potential. She is well known (especially by the "old-timers" on there) on the Einstein-Syndrome list.

Expectations
By Jenny Marrs

John is 13 years old and has Trisomy 21 Down syndrome.  He took his first steps at 13 months, and began reading at 2 ½.  He knew all the alphabet and numbers by age 3, and was fully potty trained before his 3rd birthday.  Prior to Kindergarten, John was tested in word recognition to be at a first grade 6th month level.  In Math, he tested at a Kindergarten 6th month level.  Today he continues to excel in a regular 7th grade classroom doing the same work as his peers.

John is not the only child with Down syndrome achieving such accomplishments within typical time frames.  John is merely doing the things all children with Trisomy 21 are capable of accomplishing—provided they have not acquired medical or other complications which could affect learning capabilities.  Some complications that could affect learning capabilities are untreated thyroid, hearing or vision disorders, autism, brain damage, attention deficit, fetal alcohol syndrome or constant upper respiratory infections.   I do not believe that there exists a range of functioning in persons with Down syndrome merely due to the 47th chromosome.  I believe every child with Down syndrome is capable of reaching for the stars.  It is crucial that parents believe this, and then help their children to achieve this goal.

For the most part, in today’s world, I do not see a society that believes in what the child with Down syndrome can do.  The available information is outdated and there is an abundance of old stereotypes and misconceptions among professionals---professionals who should know better.  Parents have a hard job helping their child reach for the stars because they go against what most educated professionals think and say.  I began this journey by thinking that John would teach THEM and that we would be opening some eyes.  Some have been opening, but very, very slowly.  In general, rather than give John the credit for his hard work, most just like to shrug and say, “He’s high functioning Down syndrome.”   In reality, John’s function is a reflection of the opportunities he has been given and the hard work he has done. 

I think the biggest burden on our children today is the many labels put on them, beginning with “Down syndrome”.  In 1865, Langdon Down observed these children and made a list of symptoms that he felt made them different from other children. The word “syndrome” is defined as “a list of symptoms”.   Because of this list made in the year 1865, our children are burdened at birth with this label and list.  This label/list is why many people look at John but can’t see the child.  This is why some of his past doctors were willing to accept illness for him, and it didn’t even occur to them to attempt wellness.  This is also why most of society has so many misconceptions about Trisomy 21.  Down syndrome is a label that suggests symptoms that may or may not be there; symptoms that CAN be addressed and for the most part eliminated.

John has a medical diagnosis of Trisomy 21.  Research tells us that there are metabolic issues we need to address to prevent the extra chromosome from wreaking havoc on John’s system.  We address this issue.  However, John does not now carry nor will he ever carry labels designed to hold him back.  We know his many strengths as well as his weaknesses.  This allows us to address each issue as it pertains to John.  Not as it pertains to an entire segment of the population.  Not as it pertains to a study, and not based on past performances of various children in various situations.  Just John. 

Another injustice to our children is the developmental chart suggesting almost everything will be later.  Buy into that thinking, and everything is almost certain to be later.  Because of low muscle tone, John did need more help to accomplish gross motor milestones, but we did accomplish them in a typical time frame.  I believe in the importance of the “windows of opportunity”, and I believe those windows are the same in all children.  I believe that the child who develops within those windows of opportunity has an edge.  The professionals that I first looked to for guidance, my doctor, therapists, and Early Intervention providers, all accepted the “special” charts, and did not strive for a normal development.  Normal development would not, in most of society’s eyes, be realistic.  “Reality” to them was that John had Down syndrome, and their education and experience had taught them to expect less.  My reality and experience tells me that if you expect less then less is exactly what you will get! 

Because of low expectations, professionals are stifling our children’s potentials.  It begins at birth and continues throughout our children’s lifetimes.  As it turns out, the child fulfills all of those dire predictions, not because that was his potential, but because he was educationally deprived by a very archaic system.

Granted, society has come a long way from the days when the child with Trisomy 21 was institutionalized, but we haven’t come nearly far enough.  We have advocate groups whose goals are to have society accept our children’s disability.  Society is much TOO willing to accept disability.  I not only want society to see John, I want society to see John’s potential.  Just look at the list of symptoms that a child with Down syndrome is expected to have.  Next look at the description of Down syndrome in the American Medical Association medical book.  These do not describe my child.  This tells me that we have a long way to go.  These are examples of society’s opinions.  This is what is taught to our future professionals.  This is how they view Trisomy 21.  I will not put my child’s health or educational welfare in “society’s” hands.  “I will not let his schooling interfere with his education.”  (Mark Twain)

I am tired of seeing television shows that are intended to make people feel all warm and fuzzy because they accept individuals with Down syndrome and their so-called disability.  I want to see television programs that concentrate on ability, and will educate the public about our children’s true potential.  When John was an infant, care providers leant me a video portraying a child with Trisomy 21 who was included in a typical classroom.  Instead of focusing on a child beginning his school career, this video takes an older child who has been educationally deprived and who lacks discipline, and then follows him through the school year.  The truth is, the child with Trisomy 21 is capable of learning at an equal or above average rate.  Why do we accept educational deprivation for the child with Trisomy 21? 

I think most children with Trisomy 21 display signs of having difficulties with speech, and this makes it all the more difficult for people to see their potential.  This speech delay, coupled with society’s misconceptions, leads to greater misunderstandings.  If a child has a hard time presenting his knowledge through speech, it is hard for anyone to grasp how smart he is.  John had a very large vocabulary when he entered Kindergarten, but he had a hard time making sentences.   He was not confident with speaking, so he spoke very little.  Naturally, people made incorrect assumptions and judgments based on this child with a speech delay, and a label of Down syndrome.  When I told people of John’s reading capabilities, it was as if their eyes would glaze over.  They smiled.  They were polite.  Finally, they changed the subject.  I found that I needed to make videos for these people, or provide the opportunity for John to prove his capabilities in person.  Then the mouths would drop open, and they would ask, “How did he do that?” 

My heart goes out to the many children who have suffered because of society’s misconceptions.  These children have such wisdom to share and yet are unable to because they have a speech difficulty, and because society has a listening disability.  These children know that we are stifling their potential.  They know so much more than we can even grasp, possibly because they are content to be silent and listen, which is the avenue to true wisdom.

We need to believe what these children can do; we need to help them achieve their potential.  Remember, the syndrome doesn’t have to happen.  When society sees the extra that is in these wonderful children, they will perhaps change their tendencies to labels that predict doom.  Perhaps an amniocentesis that suggests Trisomy 21 won’t be seen as an opportunity to make a choice.  Rather, this child will be seen as the gift that he is; a child with more, not less; a child who will teach us more than we will ever dream of teaching him.  This child touches the heart in a very special way, and has a profound message for those who have the wisdom to listen.




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31 for 21: Results of Survey by Dr. Brian Skotko

Dr. Brian Skotko has a sister with Down syndrome. He has done a lot of research and work for and with families and people with Down syndrome. Results of a recent study of his are below.
 

Down Syndrome Brings Joy, Not Regrets, for Many Families

Survey finds people living with those who have the disorder have been enriched by the experience

By Amanda Gardner
HealthDay Reporter

FRIDAY, Sept. 30 (HealthDay News) -- Louise Borke learned that her infant son had Down Syndrome when he was just a few days old.

Her reaction? "Shock and surprise, trepidation and anxiety," she recalls.

Today, 22 years later, Borke can look back at life with her son, Louis Sciuto, and say, "It's been fun. It's had its challenges -- I won't deny that -- but it's been fun. It's been rewarding and I have no regrets."

Borke is not alone in her views.

In a series of recently completed surveys, 96 percent of parents expressed no regrets about having a child with Down Syndrome and nearly eight out of 10 said the child had enhanced their lives by teaching them patience, acceptance and flexibility, among other things.

Siblings had similar feelings, with 94 percent feeling "pride" about their sibling and 88 percent saying the sibling had made them a "better person."

And virtually all people with Down Syndrome who were queried said they were happy with their lives and liked who they are.

"The voices we heard were very satisfied and very positive about their lives despite the fact that they have real challenges," said Dr. Brian Skotko, who conducted the surveys, which appear in the October issue of the American Journal of Medical Genetics.

Skotko, a physician with the Down Syndrome Program at Children's Hospital Boston, hopes the results will help families make decisions regarding their unborn babies, especially as prenatal tests become more widely available.

Right now, prenatal tests for Down Syndrome run the risk of miscarriage and only about 2 percent of women actually get tested.

But new, virtually risk-free blood tests are about to hit the market and Skotko wanted to make sure that parents grappling with this "complex, sensitive, difficult decision" had good information to go by.

No one knows exactly how many women who learn their baby will have Down Syndrome through prenatal testing opt to terminate their pregnancies. But small, selected studies suggest the numbers could be as high as 80 percent to 90 percent.

"Once everyone has the opportunity to learn prenatally with a simple blood test, what decisions will Americans make about pregnancies and will babies with Down Syndrome slowly start to disappear?" said Skotko. "People with Down Syndrome should be able to describe for Americans what it means to have the condition."

Julie Cevallos, vice president of marketing for the National Down Syndrome Society (NDSS), said, "This research is a great new development. What's particularly exciting is that you're hearing from families and siblings and self-advocates directly.

"The more information and the more accurate information coming straight from families [the better]. Sometimes there's inaccurate information out there, or just stereotypes," added Cevallos, who's 2-year-old daughter, Nina, has Down Syndrome.

Skotko, who is an NDSS board member, has a 32-year-old sister who has Down Syndrome. "She has an active and robust social life, more than I ever had," she related.

As for Louis Sciuto, Borke said that he has just landed a job at Target and also has an active social live, keeping up with the latest movies, playing sports and double-dating with friends.

What would she tell parents who have learned their child may have Down Syndrome? "I would tell them don't be afraid. It's different but it's not worse. Louis has had friends whose parents have told me that they believe their children are better people for having known Louis."




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31 for 21: What Is Down Syndrome?

I haven't ever really posted anything about this on the blog before, so I thought it would be good to post. It seems so basic to those us involved with Down Syndrome, but a lot of people are totally clueless when it comes to what Down Syndrome is caused by.

Here's some basic information shared from the National Association for Down Syndrome:

Down syndrome is a genetic condition that causes delays in physical and intellectual development. It occurs in one in every 691 live births. Individuals with Down syndrome have 47 chromosomes instead of the usual 46. It is the most frequently occurring chromosomal disorder. Down syndrome is not related to race, nationality, religion or socioeconomic status. The most important fact to know about individuals with Down syndrome is that they are more like others than they are different.

Down syndrome is usually identified at birth or shortly thereafter. Initially the diagnosis is based on physical characteristics that are commonly seen in babies with Down syndrome. These include low muscle tone, a single crease across the palm of the hand, a slightly flattened facial profile and an upward slant to the eyes. The diagnosis must be confirmed by a chromosome study (karyotype). A karyotype provides a visual display of the chromosomes grouped by their size, number and shape. Chromosomes may be studied by examining blood or tissue cells.

Down syndrome is usually caused by an error in cell division called nondisjunction. It is not known why this occurs. However, it is known that the error occurs at conception and is not related to anything the mother did during pregnancy. It has been known for some time that the incidence of Down syndrome increases with advancing maternal age. However, 80% of children with Down syndrome are born to women under 35 years of age.

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31 for 21: It's October (already)!

Wow, it's hard to believe it's already October 2011. The year has gone by so fast. But, with October comes National Down Syndrome Awareness Month (and also a whole host of other "such and such awareness month", but we aren't focusing on that!).

As I mentioned before and as we did last year, we are taking on the 31 for 21 blog challenge. The goal is to post a blog a day for the month (31) of October, because of Trisomy 21.

Head on over to Unringing The Bell, sign up for the challenge and grab the button. If you happen to miss a day, that's okay. It's a challenge, but is a lot of fun and quite rewarding. It spreads the word about people with DS and I've gotten a lot of emails and comments doing this.

There You Are
by Robbin Lyons

There you are.
What will you become?
And here I am
Feeling overcome
And they say
You’ll struggle thru your days
Oh, what will you become,
My precious little one?
And there you are,
So different from the rest.
And here am I,
Felling I’ve been blest.
Each day is new.
Each day a test.
But, we get through,
No different from the rest.
And there you are.
Looking almost grown.
And here am I,
Welcoming you home.
I never knew,
You’d make it on your own.
You really found your way
And never once afraid.
And there you are,
So different from the rest.
And here am I,
Feeling I’ve been blest.
Each day is new.
Each day a test.
But, we get through,
No different from the rest.
And there you are
No different from the rest.
And here am I
How was I so blest?
You’ve made my life
No ordinary path
So different from the rest.
I know that I was blest.
You’ve made my life
No ordinary path
So different from the rest.
Thank God,
I truly have been ….BLEST

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