I was hoping to connect with other moms of kiddos with this diagnosis.

Thanks so much!

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She does receive cognitive support, but does seem to be pretty much on track and I think she's a smart cookie. 
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Here is the support list-serve:
http://home.ease.lsoft.com/scripts/w...OONAN-SYNDROME You can click on the "Subscribe" button and then sign up. Has she started any kind of therapy? Matthew had OT/PT since 8 months and then switched to PT/OT at 14 months and that has been WONDERFUL for him. He's really made great progress and is starting to walk now! |

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) in my family also have it. I have some cousins on my paternal grandfather's side that had some more severe heart defects. My son is the first time we got a diagnoses like that.

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Thanks so much for the reply! I can't see your cutie's photos - probably because I don't have enough posts yet? It says I don't have permission...
So it's possible that you have it also? Wow! We know for a fact that DH and I don't have it - LOL we're both over 6' tall... |
We don't have any tall genes at all. My husband's family is even shorter than mine.Kate also has a VERY forceful personality! My sister in law likes to say that she's this tiny little person but she is a FORCE to be reckoned with... ![]() ![]() |

Hi i am not a mom but i myself have Noonan syndrome and i am about to be 21. i had trouble in school and grasping things when i was younger. if you ever want to talk you can e-mail me at un1uq3@yahoo.com i can tell you alot about it and i can help you out on what to expect but just know every child is different.
Hi. I know it has been awhile since anyone posted here about Noonan's Syndrome, but I hope somebody sees this. I had a son 22 years ago that was diagnosed with Noonan's Syndrome. Unfortunately he had severe heart defects and only lived 8 weeks. 18 Months later I gave birth to my daughter who is now 20 years old. She has a minor heart defect but otherwise healthy. Thank God. I lost a pregnancy in the sixth month three years later and was informed that this baby also had Noonan's. So I know it is somewhere in either mine or my husband's family but do not know where. I am amazed how much more information in available then there was 22 years ago. Anyway the reason I am writing is, my Niece is getting married in November and they have decided that in lieu of buying wedding favors for their guests, they would like to donate the money towards either a support group or perhaps a family with a child with Noonan's who could use the help. This won't be a donation of great magnitude, but will be generous. If anyone can send me in the right direction, I would truly appreciate it.Â
Thanks,
Chris
A Very Proud Aunt
The main organization that I know of is The Noonan Syndrome Support Group (TNSSG) - http://www.noonansyndrome.org/giving.htm
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that is wonderful that your niece and her fiance are doing that. what a nice thing.
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Devon
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