Pooh_Friend#1
<font color=blue>Check out my year round tan!</fon
- Joined
- Dec 15, 2003
I just wanted to let you know that you and your baby are in my prayers.
-
Controversial Topics
Several months ago, I added a private sub-forum to allow members to discuss these topics without fear of infractions or banning. It's opt-in, opt-out. Corey Click Here
My baby has a chromosonal defect? She's HERE & HEALTHY! Post 355!!!
- Thread starter raysnkaysmom
- Start date
perdidobay
<font color=green>Will work for travel ;-)<br><fon
- Joined
- Feb 17, 2001
You and baby are in my thoughts and prayers. Take care of yourself.
alizesmom
Dreaming of Disney.
- Joined
- Jun 17, 2007
That is not a shallow question. Taking a special needs child to WDW requires a bit more planning and strategizing. You may have to aim at a slower pace, otherwise go for it. Karen
talulabelle
DIS Veteran
- Joined
- Jul 25, 2007
Yeah but if baby has downs, he/she will probably need heart surgery shortly after birth.....wait until you know whats going on for sure then talk to doctor. Trips can always be delayed.
IF it turns out to be Down syndrome, rest assured that your baby will be more like any other child than not. There are three 21st chromosomes. All the rest of them are normal. Your baby will cry, smile, coo, nurse, soil his/her diapers, cause you to lose enormous amounts of sleep, may be colicky or may not, everything you would expect from a baby without trisomy 21, you can expect from a baby with trisomy 21.
A baby with Down syndrome typically does not need any different kind of care or treatment than any other baby.
We traveled everywhere with our daughter as an infant and she was one of the few that did have major health issues. Although, in today's world, half the stuff we went through, would not be even done today.
At 8 months old, 6 weeks post heart surgery, we were in Hawaii for 3 weeks. We would have traveled sooner, but heart surgery wasn't as advanced 21 years ago as it is today. What my daughter had open heart surgery for can now be fixed with a catheter and a balloon. Remarkable.
At 18 months, she was on her way to her first visit to Europe.
Don't ever beat yourself up for wondering! Everyone of your questions is valid and certainly not selfish. This is an unknown for you - ask away.
That is simply not true.
First of all, less than 45% of babies with Down syndrome are born with any kind of heart defect. And for most of those, they are small holes that usually resolve by themselves or need a minor repair. With the advancement of cardiac care, very few kids with Down syndrome need open heart surgery anymore.
There are a couple of problems, that while rare, can occur and need immediate surgery or attention. There also might be some health issues you need to attend to. For instance, kids with Down syndrome can be more suceptible to infections, so may have more runny noses and ear infections. But most health issues can be dealt with, even on vacation. Even oxygen is not a big deal and can be handled easily on a vacation. Trust me on that one
Most people I know don't take very many extra precautions with their baby than any other parent.Although I will agree that, as with any baby, you consult with your pediatrician and OB/GYN for travel directly after birth.
I don't know if you are anywhere near Denver, but we had some very exciting and breaking news for people with Down syndrome.
Hopefully, this will push the research into high gear. Denver was already leading the research in Down syndrome, having sucessfully mapped the 21st chromosome and making some great discoveries. The researchers are close to determining the gene that causes the developmental delay and it is widely believed that raising the IQ of a person with Down syndrome by 20 points is in the very near future. When most people with Down syndrome fall in the IQ range of mild to moderate delay, this will push them right into normal IQ or only slightly delayed.
It is very exciting times for people with Down syndrome. The future for your child, if diagnosed as Down syndrome, has a very, very bright future ahead of them indeed!
By the way, John and Anna Sie are the ones flanking my daughter in the scholarship picture I posted earlier.
Global Institute dedicated to Down Syndrome
www.9news.com
posted by: Kim Christiansen 14 hrs ago Toolbox: Read Comments (6)Recommend (2)Print Article Email Article Smaller Larger
DENVER - When Sophia entered their lives, their mission became clear. They would devote their time and energy to creating the world's leading research and care center for people with Down Syndrome.
The Anna and John J. Sie foundation is committing $34 million to establish the new Linda Crnic Institute for Down Syndrome at the University of Colorado Denver's Anschutz Medical Campus. The institute will have the single research focus of eradicating the ill effects associated with Down Syndrome and will be the first to comprehensively address basic research, clinical research and clinical care all under one umbrella.
After years of due diligence and in the face of steady decreases in National Institutes of Health (NIH) funding for Down Syndrome, the Anna and John J. Sie Foundation decided that the best hope for real break-through and advocacy was a combined force made up of the University of Colorado Denver, the University of Colorado at Boulder, and The Children's Hospital in Aurora. Each organization has committed space, personnel and overhead to the Institute and it will be managed out of the Anschutz Medical Campus.
Anna and John J. Sie have high hopes for their granddaughter Sophia, born five years ago with Down Syndrome. Their family is determined to significantly enhance the lives of all people with Down Syndrome.
Chancellor M. Roy Wilson stated, "It has been a pleasure working with the Sie family in establishing this premier Institute here at the University of Colorado Denver. They bring a unique combination of philanthropy, family focus and business acumen to the table. The first $1 million in research grants that the Sie's supported in 2006 has already started to bear fruit. We are confident that insights that might be unimaginable today will soon be within our grasp due to the work of this Institute."
The Institute will aggressively recruit the best and brightest talent worldwide – both inside and outside the field of Down Syndrome and is expected to grow into a $150 million organization within ten years with staff estimated at more than 160.
World-renowned neurologist, William C. Mobley, MD, PhD, has signed on as the Executive Director of the Institute and has been a life-long advocate for Down syndrome related research.
"One of the focuses of the Linda Crnic Institute for Down syndrome is to better understand ways to improve the cognitive ability of people with Down syndrome. We are going to do that by chasing down the genes that are responsible for the problems with cognition that happen in children" said Dr. Mobley, executive director of the Institute. "Through research and improved care, we can make it easier for them to go to school, make friends, have jobs, get married and ultimately live independently. We will help them live richer, fuller lives."
One in 733 babies in the United States is born with Down syndrome. A chromosomal disorder caused by an extra chromosome, more specifically, the presence of all or part of an extra 21st chromosome. The condition is associated with impairment of cognitive ability and an increased chance of various medical issues. An estimated 400,000 people in the United States have Down syndrome and millions more worldwide.
Leslie Leinwand, PhD, of the University of Colorado at Boulder and Denver has served as the Interim Director of the Linda Crnic Institute. She said, "The establishment of the Linda Crnic Institute by Anna and John J. Sie Foundation is a landmark event for research in Down syndrome. This Institute will attract the best and the brightest minds to Colorado to tackle this complex problem to work with our existing outstanding faculty.
"Sophia has been such a blessing in our lives and has led us to meet brilliant and huge hearted scientists such as Linda Crnic, Leslie Leinwand, Larry Gold and the wonderful new leaders at the University of Colorado and The Children's Hospital. It has given my wife, Anna, and I a whole new purpose in life and Sophia's parents, Michelle and Tom Whitten, have been laser focused on understanding what we can do better for not just Sophia but for generations of people with Down syndrome to come. We are grateful that the best place to effectuate real change and discovery happens to be in our own back yard," said John J. Sie.
The Linda Crnic Institute for Down Syndrome is named in honor of the University of Colorado Denver School of Medicine professor of pediatrics and psychiatry who died in a bicycle accident in 2004. Linda became a friend and mentor of Michelle and Tom Whitten when they received the prenatal diagnosis that Sophia would have Down syndrome. Linda has inspired the Whittens and the Sies to establish this global institute for Down syndrome that will provide the highest quality of basic, clinical and translational research trials, therapeutic development, medical care, education and advocacy.
The Anschutz Medical Campus is the largest academic health center between Chicago, Texas and the West Coast. The campus is home to the health sciences programs of the University of Colorado Denver as well as University of Colorado Hospital. UC Denver researchers have a proven record of success and expertise in innovation, discovery and commercialization of therapies, drugs and medical devices. Research accomplishments of being "the first" include the development of a classification and numbering system for human chromosomes, the identification of a genetic factor that converts normal cells into cancer cells, discovering that lymphocytes are preprogrammed to respond to antigens, the foundation of modern immunology, how a human cancer gene functions, and first to identify that naturally occurring proteins in the blood prevent the AIDS virus from reproducing and spreading to healthy cells. The Anschutz Medical Campus stands as a model across the nation for a successful redevelopment of a decommissioned army base.
The University of Colorado Denver School of Medicine faculty work to advance science and improve care as the physicians, educators and scientists at University of Colorado Hospital, The Children's Hospital, Denver Health, National Jewish Medical and Research Center, and the Denver Veterans Affairs Medical Center. Degrees offered by the UC Denver School of Medicine include doctor of medicine, doctor of physical therapy, and masters of physician assistant studies. The School is part of the University of Colorado Denver, one of three universities in the University of Colorado system. For additional news and information, please visit the UC Denver newsroom online.
The Anna and John J. Sie Foundation supports the sharing of knowledge amongst peoples and cultures throughout the global community, with an emphasis on Down syndrome, international security and diplomacy, education, media, business and technology. The foundation is a supporter of the The Children's Hospital, the University of Colorado's "The Sie Family Down Syndrome Break-Through Research Initiative," the University of Denver's Korbel School of International Studies, the Denver Art Museum, the Starz Film Center, and numerous other civic, social and educational institutions
Hopefully, this will push the research into high gear. Denver was already leading the research in Down syndrome, having sucessfully mapped the 21st chromosome and making some great discoveries. The researchers are close to determining the gene that causes the developmental delay and it is widely believed that raising the IQ of a person with Down syndrome by 20 points is in the very near future. When most people with Down syndrome fall in the IQ range of mild to moderate delay, this will push them right into normal IQ or only slightly delayed.
It is very exciting times for people with Down syndrome. The future for your child, if diagnosed as Down syndrome, has a very, very bright future ahead of them indeed!
By the way, John and Anna Sie are the ones flanking my daughter in the scholarship picture I posted earlier.
Global Institute dedicated to Down Syndrome
www.9news.com
posted by: Kim Christiansen 14 hrs ago Toolbox: Read Comments (6)Recommend (2)Print Article Email Article Smaller Larger
DENVER - When Sophia entered their lives, their mission became clear. They would devote their time and energy to creating the world's leading research and care center for people with Down Syndrome.
The Anna and John J. Sie foundation is committing $34 million to establish the new Linda Crnic Institute for Down Syndrome at the University of Colorado Denver's Anschutz Medical Campus. The institute will have the single research focus of eradicating the ill effects associated with Down Syndrome and will be the first to comprehensively address basic research, clinical research and clinical care all under one umbrella.
After years of due diligence and in the face of steady decreases in National Institutes of Health (NIH) funding for Down Syndrome, the Anna and John J. Sie Foundation decided that the best hope for real break-through and advocacy was a combined force made up of the University of Colorado Denver, the University of Colorado at Boulder, and The Children's Hospital in Aurora. Each organization has committed space, personnel and overhead to the Institute and it will be managed out of the Anschutz Medical Campus.
Anna and John J. Sie have high hopes for their granddaughter Sophia, born five years ago with Down Syndrome. Their family is determined to significantly enhance the lives of all people with Down Syndrome.
Chancellor M. Roy Wilson stated, "It has been a pleasure working with the Sie family in establishing this premier Institute here at the University of Colorado Denver. They bring a unique combination of philanthropy, family focus and business acumen to the table. The first $1 million in research grants that the Sie's supported in 2006 has already started to bear fruit. We are confident that insights that might be unimaginable today will soon be within our grasp due to the work of this Institute."
The Institute will aggressively recruit the best and brightest talent worldwide – both inside and outside the field of Down Syndrome and is expected to grow into a $150 million organization within ten years with staff estimated at more than 160.
World-renowned neurologist, William C. Mobley, MD, PhD, has signed on as the Executive Director of the Institute and has been a life-long advocate for Down syndrome related research.
"One of the focuses of the Linda Crnic Institute for Down syndrome is to better understand ways to improve the cognitive ability of people with Down syndrome. We are going to do that by chasing down the genes that are responsible for the problems with cognition that happen in children" said Dr. Mobley, executive director of the Institute. "Through research and improved care, we can make it easier for them to go to school, make friends, have jobs, get married and ultimately live independently. We will help them live richer, fuller lives."
One in 733 babies in the United States is born with Down syndrome. A chromosomal disorder caused by an extra chromosome, more specifically, the presence of all or part of an extra 21st chromosome. The condition is associated with impairment of cognitive ability and an increased chance of various medical issues. An estimated 400,000 people in the United States have Down syndrome and millions more worldwide.
Leslie Leinwand, PhD, of the University of Colorado at Boulder and Denver has served as the Interim Director of the Linda Crnic Institute. She said, "The establishment of the Linda Crnic Institute by Anna and John J. Sie Foundation is a landmark event for research in Down syndrome. This Institute will attract the best and the brightest minds to Colorado to tackle this complex problem to work with our existing outstanding faculty.
"Sophia has been such a blessing in our lives and has led us to meet brilliant and huge hearted scientists such as Linda Crnic, Leslie Leinwand, Larry Gold and the wonderful new leaders at the University of Colorado and The Children's Hospital. It has given my wife, Anna, and I a whole new purpose in life and Sophia's parents, Michelle and Tom Whitten, have been laser focused on understanding what we can do better for not just Sophia but for generations of people with Down syndrome to come. We are grateful that the best place to effectuate real change and discovery happens to be in our own back yard," said John J. Sie.
The Linda Crnic Institute for Down Syndrome is named in honor of the University of Colorado Denver School of Medicine professor of pediatrics and psychiatry who died in a bicycle accident in 2004. Linda became a friend and mentor of Michelle and Tom Whitten when they received the prenatal diagnosis that Sophia would have Down syndrome. Linda has inspired the Whittens and the Sies to establish this global institute for Down syndrome that will provide the highest quality of basic, clinical and translational research trials, therapeutic development, medical care, education and advocacy.
The Anschutz Medical Campus is the largest academic health center between Chicago, Texas and the West Coast. The campus is home to the health sciences programs of the University of Colorado Denver as well as University of Colorado Hospital. UC Denver researchers have a proven record of success and expertise in innovation, discovery and commercialization of therapies, drugs and medical devices. Research accomplishments of being "the first" include the development of a classification and numbering system for human chromosomes, the identification of a genetic factor that converts normal cells into cancer cells, discovering that lymphocytes are preprogrammed to respond to antigens, the foundation of modern immunology, how a human cancer gene functions, and first to identify that naturally occurring proteins in the blood prevent the AIDS virus from reproducing and spreading to healthy cells. The Anschutz Medical Campus stands as a model across the nation for a successful redevelopment of a decommissioned army base.
The University of Colorado Denver School of Medicine faculty work to advance science and improve care as the physicians, educators and scientists at University of Colorado Hospital, The Children's Hospital, Denver Health, National Jewish Medical and Research Center, and the Denver Veterans Affairs Medical Center. Degrees offered by the UC Denver School of Medicine include doctor of medicine, doctor of physical therapy, and masters of physician assistant studies. The School is part of the University of Colorado Denver, one of three universities in the University of Colorado system. For additional news and information, please visit the UC Denver newsroom online.
The Anna and John J. Sie Foundation supports the sharing of knowledge amongst peoples and cultures throughout the global community, with an emphasis on Down syndrome, international security and diplomacy, education, media, business and technology. The foundation is a supporter of the The Children's Hospital, the University of Colorado's "The Sie Family Down Syndrome Break-Through Research Initiative," the University of Denver's Korbel School of International Studies, the Denver Art Museum, the Starz Film Center, and numerous other civic, social and educational institutions
TLSnell1981
Tiny bubbles... make me happy... make me feel fine
- Joined
- Sep 15, 2006
As I've mentioned before...I have a brother with Down Syndrome. He was born without any health problems. He's 39 yrs old and has no more health issues than anyone else. He has a little acid reflux.....like everyone else in his family.
He loves Disney and knows how to work the system. He has learned...that sometimes, he receives special treatment because of his "condition".
He loves Disney and knows how to work the system. He has learned...that sometimes, he receives special treatment because of his "condition".
raysnkaysmom
<font color=coral>I don't think I'd mention I was
- Joined
- Aug 15, 2004
wow...so much this past hr....and I'm running behind for work...I want to read these posts about downs...
but....the dr called me...my bloodwork came back..
1 in 9 risk for downs...
Saying the words aloud made me cry....
and...still I"m crying... But....I look at it like this too
It could be soo much worse! As a friend pointed out to me...children with downs, don't SUFFER from it...
Thank you everyone for your encouragement...
but....the dr called me...my bloodwork came back..
1 in 9 risk for downs...
Saying the words aloud made me cry....
and...still I"m crying... But....I look at it like this too
It could be soo much worse! As a friend pointed out to me...children with downs, don't SUFFER from it...
Thank you everyone for your encouragement...
Go ahead and cry all you want and don't be ashamed of it. It is normal and healthy. Nobody wants this for their children. It is not what any of us dreamed of. The shoulders of everyone on this thread are here for you to cry on.But remember, you also have an 8 out of 9 chance it is not Down syndrome. That is an 88.9% chance that everything is normal.
TLSnell1981
Tiny bubbles... make me happy... make me feel fine
- Joined
- Sep 15, 2006
I remember crying once because my brother has Down Syndrome. I cried for the things in life that he wouldn't have. I have since learned...there isn't much he can't have......and there is soooooo much more that he does have. If you find out your sweet baby has Down Syndrome......there are so many positive things I can tell you. You can't begin to imagine the pure love you receive from these special individuals. Let's concentrate on the baby being healthy. I promise.....if your baby has DS.....it WILL be okay.
One only has to listen to the music that Suj plays to know that life can be full for anybody with Down syndrome.
His wedding photos are great too!
http://www.sujeet.com/
One of the guys on our board of directors (Mile High Down Syndrome association www.mhdsa.org) has Down syndrome. When he goes out and advocates, he tells everybody not to feel sorry for him nor call him disabled, his life is fine, thank you very much
DMickey28
<font color=blue>DIS Veteran<br>Comes from a very
- Joined
- Mar 24, 2001
It is amazing when you put it into perspective from the 'other' direction. Goofy! - I have read your posts to the OP. You are such a positive person with such wonderful information for her. Thank you.
OP -
It's ok to cry and it's okay to feel every single emotion that you are feeling. It's normal and it's ok. Please do remember we are here for you or whatever you need.
Scutapipig
Bookets of uddles and nuddles of bouquets!!!
- Joined
- Sep 29, 1999
Hi Tracy,
I've been following along and reading since you first posted. Goofy has already said everything I would have shared with you...and said it very well, too!
Please trust me when I tell you that as your child starts to grow and wiggle you will find delight in that. And when your child is born and you see that beautiful face looking back at you, your heart will burst with joy and you will know, without a doubt, that you can take on and tackle anything that is thrown your way.
And please don't forget, you will have the encouragement and support of many here. Complete strangers, all sharing your joy, who will stand beside you every step of the way.
Karen
I've been following along and reading since you first posted. Goofy has already said everything I would have shared with you...and said it very well, too!
Please trust me when I tell you that as your child starts to grow and wiggle you will find delight in that. And when your child is born and you see that beautiful face looking back at you, your heart will burst with joy and you will know, without a doubt, that you can take on and tackle anything that is thrown your way.
And please don't forget, you will have the encouragement and support of many here. Complete strangers, all sharing your joy, who will stand beside you every step of the way.
Karen
raysnkaysmom
<font color=coral>I don't think I'd mention I was
- Joined
- Aug 15, 2004
sooo many of you.. Thank you.
DBF & I just got back from lunch, and we are both optimistic, but I must say...he's doing much better than me... lol
I think I left my phone up at the restaurant... so I'll be late for work anyways going to track it down, so just wanted to check in here.... so much support!!
And, goofy, thank you so much for sujeets webpage.. it's awesome and very promising.
My friend also pointed out the 8 out of 9 that it's not, and although that sounds even better, it's like I do believe it is Downs, and I'm ok with that. I picture all the ways my life will be enriched that I never knew possible, and I will give my child the best normal life possible.
DBF & I just got back from lunch, and we are both optimistic, but I must say...he's doing much better than me... lol
I think I left my phone up at the restaurant... so I'll be late for work anyways going to track it down, so just wanted to check in here.... so much support!!
And, goofy, thank you so much for sujeets webpage.. it's awesome and very promising.
My friend also pointed out the 8 out of 9 that it's not, and although that sounds even better, it's like I do believe it is Downs, and I'm ok with that. I picture all the ways my life will be enriched that I never knew possible, and I will give my child the best normal life possible.
julezdisney
Disney Obsessed
- Joined
- Mar 7, 2008
I believe the parents (natural or otherwise) are usually matched to the child they are gifted to recieve. It's up to the parents to realize this and live to measure up to that potential. I think your response here is beautiful and I wish nothing but good things for you and yours-whatever the outcome.
MickeysMommy
DIS Veteran
- Joined
- Feb 7, 2003
I just found this - my prayers are with you.
DisneyGoddess
Mouseketeer
- Joined
- Jul 25, 2003
I also wanted you to know you have have been in my thoughts and prayers since I read your first post. I think you've gotten some great and sage advice from many of the previous posters.
Just think if someone told you you had an 89.9% chance of winning the jackpot in vegas you'd jump at those odds thinking they were awesome. That is what you are dealing with now - great odds your little one will be born without downs. I know working the odds is a hard thing to do because I have a 1:4 chance (25%) of having another sick baby. With my second pregnancy I was blessed with healthy baby girl and now we are trying again - I always tell myself 75% chance of healthy isn't bad at all.
I also wanted to share some very wise advice I received from a good friend - Don't bleed til your shot. All the worry in the world isn't going to change the outcome, so do your very best to focus on the positive until there is a diagnosis in place.
Just think if someone told you you had an 89.9% chance of winning the jackpot in vegas you'd jump at those odds thinking they were awesome. That is what you are dealing with now - great odds your little one will be born without downs. I know working the odds is a hard thing to do because I have a 1:4 chance (25%) of having another sick baby. With my second pregnancy I was blessed with healthy baby girl and now we are trying again - I always tell myself 75% chance of healthy isn't bad at all.
I also wanted to share some very wise advice I received from a good friend - Don't bleed til your shot. All the worry in the world isn't going to change the outcome, so do your very best to focus on the positive until there is a diagnosis in place.
Just wanted to add my prayers and support. You've gotten some really wondeful words of wisdom from people who have been there, I think that it's great that we have a resource like the Dis boards to get support and advice. I wish you all the best with your beautiful baby.
Laura
DIS Veteran
- Joined
- Aug 21, 1999
Down syndrome isn't the end of the world, anyway. It's not what any of us would wish for our children, but there are far worse things to have.
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