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Noonan Syndrome stories
i was born premature to a mom who lived a very unhealthy lifestyle so even though I was really small and sick, no one really thought much of it.
soon they had to take it seriously because I was only getting worse not better. The older I got, &...
My Little Lily was born on the 17th May 2016. She is a twin. Her sisters name is Anna. We all got a surprise when Lily was born as we were expecting her to be a 7.5lb baby but she was only 4lbs14oz. She had trouble feeding as she wouldn't latch and t...
Views: 645 Feb 20, 2023, 2:49 PM by Lily
my name is bree. my daughter and fiance have noonan syndrome. Arraya was diagnosed at 6 weeks of age with failure to thrive, supravalvular pulmonary stenosis, bilateral cleft palette, poor latch on. the first year...
Views: 590 May 9, 2017, 3:19 PM by Bree
I was diagnosed at age 12 because of my short stature. I have a cardiac malformation but not usually related to Noonan syndrom. I'm small but at least the same height as my parents, 5 feet 6 inches ! The geneticist found right away which syndrom I ha...
Views: 582 May 19, 2017, 10:24 PM by Guillaume
I am 22
I live on my own
I have had 21 surgeries, heart-HOCM-now have and ICD, eyes, ears-now have a BAHA
I have a drivers license
Views: 557 May 20, 2017, 10:22 AM by Kayla
Noonan Syndrome forum
Hi I want to learn more about Noonan syndrome. Can you help me?
Views: 202 Nov 24, 2020, 7:54 AM by Sui
It is genetic or does it have other causes?
Views: 194 Nov 25, 2020, 6:06 AM by Louisa
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