My name is Donna and I am mother to 3 wonderful children: Frankie 8, Alex 7, and Lil Pat 4. My husband Pat and I had never heard anything about NS until Lil Pat was born. He has pulmonary stenosis, developmental delay, poor muscle tone, feeding issues at birth, enlarged ventricles in the brain, short stature, and for our Christmas present last year he started having seizures – daily. He has 4 – 10 seizures daily and he will not grow out of them. They are very hard to control with medicine. We are looking towards surgery hopefully in the spring to reduce the number of seizures a day.
At the time Lil Pat was born we had started to notice Alex’s severe speech problem and behavioral problems also began. His speech has since progressed so far that he barely qualifies for services through the school. He has some reading issues but like everything else he works very hard to overcome them. He and Lil Pat started growth hormones 2 weeks ago for short stature. At the time of Lil Pat’s diagnosis of NS, we were put in touch with [...] continue the story