Noonan syndrome Member Introductions


#44

My husband was just diagnosed with NS this year 2008 we had a son and it was thru him that we found out. He is 30yrs now and he has had 2-open heart surgeries and 1-stent placed back in 2006.

He is a very joyful person and when we found out or him i should say he was like wow i finally know who i really am…LOL

He has JRA(arthritis really bad in his ankles and knees due to NS because of his short statue) he has never taken GH of any kind.

He is very skinny though(wish i was J/K)very high metabolism. Don’t let NS scare you.It makes you very different and special. My husband says that GOD is just working on his testimony because you never know your storm is someone else’s hope.
Hang in there bud!!! I’ll be praying for you…

Zayra
wife to Devaran-NS-30yrs and mom to Elijah-NS-5mths

Wait on the Lord, and he shall strength thine heart.
Psalm 27:14


#46

Hi my name is Val my brother is 18 years old with NS and DWS. I want to learn more about NS and if anyone else has experience with these two syndromes 


#47

Hi. I am the mother of three boys, ages 5, 3 almost 4 and 8 months.

We have been through a lot with our boys. Our first son has had development and behavioral challenges and was diagnosed with autism spectrum disorder at 3. Two months later our second son at age two was also diagnosed with ASD. Our third son was flagged as high risk and was heading towards the same diagnosis when we found out he has the genetic mutation that causes Noonan Syndrome.

Upon researching Noonan Syndrome I realized my second son 100% has it and he was likely misdiagnosed. We are still waiting on genetic results for our first son. My husband also has the mutation and some mild symptoms we never recognized as Noonan Syndrome. After spending two years thinking my three boys all had autism we think it’s likely they all have Noonan so shifting gears a bit here.

We have been lucky with health so far. Nothing has come up with heart issues, but we haven’t been looking. They are all big kids, in the 90th to 100th of height and weight. But they do have some of the other physical features - large heads, short necks, second son has very low tone and ptosis.