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"No act of kindness, no matter how small, is ever wasted"
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This is Theresa Mahmood Woodbridge, Virginia USA
My son Idrees has Noonan Syndrome. He was diagnosed shortly after birth. He is positive for the PTPN11 mutation, specifically D61G. He was born with congenital heart defect (transitional AV canal and pulmonary valve stenosis), a defect of one kidney, undescended testicles, low platelet count and high white blood cell count. The heart, kidney and testicles were all repaired surgically during the first 18 months. Idrees was thought to have leukemia, Juvenile Myelomonocytic Leukemia, due to his high white blood cells, low platelets, and enlarged spleen and liver. However, those things all resolved on their own without medical intervention by the time he was 2 years old. We did have his blood checked every 3 months until he had been a year in the normal range. At age 4, Idrees required another heart operation because his pulonary and mitral valves were still stenotic. During that procedure, both valves were replaced. The mitral valve is mechanical and therefore requires that Idrees take a blood thinner. He has very short stature, mildly low muscle tone, and the facial characteristics of Noonan Syndrome. Developmentally, Idrees has progressed within the normal range (sitting at 8 mos,, walking at 15 mos., talking in 2-3 word sentences at 2) and appears to have no cognitive deficits. He does not require special education at this time. Personality wise, Idrees is very outgoing, positive, and enthusiastic. He enjoys singing, acting, imaginary play and playing with his friends. People are usually drawn to him and he is well known in places we frequent (swimming pool, gym, grocery stores, pharmacies, Dr's offices, etc....) He is a delightful child and I'm the luckiest mom in the world (although it doesn't always feel like it)!!
Idrees has a 13 year old brother and lives with his mom, dad, and brother in Woodbridge, Virginia. |
