Del (16) (q13q21) Deletion
Our youngest son, Taku, was born on May 24, 1981. I had an amnio during the pregnancy and results indicated a normal, healthy boy. But the test was wrong. After Taku was born, our family life was never to be the same.
Taku stayed in the hospital for three months. I still remember that scene after 18 years when the doctor came to speak to us. The doctor said we better send Taku to an institution or group home because he will destroy our family someday. She also said that this is the only way to keep our family together.
I made up my mind at once and said that Taku is one of our family and he's coming home with us. Everybody said that Taku would not live long and every time I heard that I felt deeply depressed. I recently found an old calendar and recalled how weak, sick and small Taku was.
Taku had a doctor's appointment almost every week until he was four years old. He had to see a wide variety of specialists, including the pediatrician, pediatric cardiologist, audiologist, pediatric dentist, plastic surgeon, orthopedist, dermatologist, ophthalmologist, plus cleft palate clinic, genetic clinic, OT and PT.
He started having seizures when he was four. Sometimes the seizures were so severe we rushed him to the emergency room. Luckily we lived near the children's hospital. Every three months we went to the lab to check on medication levels for the seizure medicine but even with powerful medications, not all of his seizures were suppressed.
When Taku was eight years old he had patent ductus arteriosus surgery. After that surgery his seizures were less severe and less frequent. He had his last seizure at twelve and since then we've reduced his medication little by little until he stopped taking all the medication at 13. The doctor said later that Taku's brain needed more time to grow.
Taku started walking sometime that year. The doctor said that if a child doesn't walk by 7, they never will. We are lucky parents.
This spring the pediatric dentist informed us that Taku's tooth roots are very short so he will lose all his teeth someday and a couple of teeth are already moving.
This summer Taku's legs were so sore that he barely walked for a couple of days. We took him to the orthopedist and had some x-rays. They showed that both leg bones weren't in hip socket and Taku would need hip replacement in the near future. That news broke my heart.
His growth is very, very slow. His size is about an eight year old's and he still has lots of mental and physical problems. Taku is a healthy and happy boy now. We are not sure about his future, but we hope everything will be okay. He is a miracle boy and he is my and everybody's love.