Genetic disorders

United States
February 26, 2007 10:55pm CST
My son has a genetic disorder called Noonan's syndrome. Three questions: has anyone ever heard of Noonan's? does anyone here have a child with Noonan's? does anyone have a child with a different disorder?
3 people like this
4 responses
@byfaithonly (10698)
• United States
27 Feb 07
Has anyone ever heard of Noonan's - No Does anyone here have a child with Noonan's - No Does anyone have a child with a different disorder -No, praise the Lord I have been blessed with 4 children and 5 grandchild and none have had any disorders.
• United States
27 Feb 07
Praise the Lord indeed. I am so glad you have been so blessed. To the best of my knowledge my son is the only one in my family to have a genetic disorder.
@byfaithonly (10698)
• United States
27 Feb 07
It was interesting, I've never heard of this desease before so was doing some online research. It is rather common but they said it is inherited but that many who are born with it have parents who have no sign at all.
1 person likes this
• United States
27 Feb 07
The geneticist couldn't find traits in either side of the family. Thank you for looking it up. I am glad that my post made at least ONE person aware. Thank you from my son too. (shoot I wish I could put his picture here)
@rainbow (6761)
14 Mar 07
Hi honey, I'm so sorry I have never heard of this, but I'm sure your son is a wonderful little person in his own way! I hope your little boy has his surgery soon and everything goes well foryou all. If you ever need to talk about it all, I promise to listen, I may not be able to help but I promise to be there and try and help you make sense of things if you need someone to. Please let all your friends here know how he gets on! My 7 year old has Autism, ADHD and suspected Dyspraxia, non of which are luckily life threatening. He had an MRI scan this week to try and confirm that his headaches are stress related.
1 person likes this
• United States
21 Mar 07
Most people have not heard of this. You are right my son is a great little guy. We lost our medicaid when they decided that they aren't going to give him SSI anymore; I don't know how we could pay for surgery now. Thanks for your offer. It is nice to have someone to talk to. I hope they are able to help your son with his headaches.
@crazynurse (7482)
• United States
28 Feb 07
Yes, I have heard of Noonan's syndrome. I am a nurse (work as a nursing professor now) and last year while working with students at our small local hospital, a geneticist from a larger city came to see several patients that the local pediatricians had referred. One of the children that was examined that day had Noonan's syndrome. He was the most beautiful child present. He had snowy blond hair and the most precious smile. He was hard of hearing but could smile his way through anything! He was going to have to go to a larger hospital and have a heart surgery due to problems associated with the Noonan's. I don't think that I have ever seen a more loving child. My students fell in love with him!
1 person likes this
• United States
28 Feb 07
Oh my gosh sounds just like my son. I can't take him anywhere without someone telling us how cute he is. And his personality - he is so sweet. He has a smile that will melt ice. People really do fall in love with him. I can't tell you how often his therapist's tell us they love him. I even had one that evaluated him who said she wished she wasn't going on maternity leave cause she wanted to be his therapist!! I want a more aggressive cardiologist... my son will need open heart surgery. We would like it done before he is really old enough to remember it. I strongly feel it is affecting his growth... he is SO tiny!!
@applsofgld (2506)
• United States
28 Feb 07
I have never heard of Noonan's syndrome before, and I do not have a child with it nor were any of my children born with any kind of disorder, I was truly blessed with healthy children. My sister had the most severe case of epilepsy I've ever heard of, and suffered brain damage as a result. But other than that, so far our children are ok. I wrote Noonan's syndrome down so I can go back later and read up on it. I am so sorry that your precious child was born with any kind of disorder. I have notced that the children who are born special, are the most precious natured little angels of all. God bless you and your family.
• United States
28 Feb 07
Thank you for your blessing. God has truly blessed me with this child. He is a LOT of work and can be a real drain on me BUT he is so sweet and loving and gosh I could go on and on but I won't. I appreciate that you are going to look Noonan's syndrome up. It seems to be pretty common but no one I know has heard of it; I didn't till my son was diagnosed. I am also blessed with two healthy daughters. I don't know why God chose me to be the mommy of this precious little boy but I am glad he did. I would be lying if I said that I don't pray for his heart to heal without needing open heart surgery.