Taufiq

He is about 7-8 years old. His family told us that he is mad.
"He gets fits. He falls down on the ground, and foam starts coming from him mouth."
Classic epileptic fits symptom.
"But there are medicines."
"Yes the doctor gave us medicines. He said that Taufiq will have to take it for five years. However, even with medication he gets fits. And he is not normal. He is mad."
Mad is the common term for any child with developmental disability. Many children suffer either from physical or developmental disability. Sometimes, there is both. The parents, in the rural areas, have no clue what to do. If the siblings are normal then they will be sent to school. But a child with disability is left alone. The parents have no support system and many times are unaware of the nature of the disability.
"His brother also has the same problem. He too cannot walk. The sister is okay."
When the parent told us this, I knew it was an X-linked disorder. Myotonic dystrophy is an X-linked disorder that I often teach my class.
Then there was this child, who loved to take bath. He came shambling up towards us as we sat on the cot. The moment I saw the child I knew he had Down's syndrome. The mother told us:
"We have six children. Three daughters were born and we wanted a son. Then he was born."
The father took up the tale:
"He walked late, he spoke late."
"He was almost four years before he said a word."
"Did you take him to a doctor?"
"We showed him to many doctors."
"What did they say?"
A shrug.
No one has bothered to refer the child to a bigger hospital where tests, especially karyotyping, could be conducted. Down's Syndrome is easily recognizable by karyotyping- chromosome 21 is present in three copies. In addition, so much research has been done on this particular syndrome that it is today possible to educate the child to lead an almost independent life.
There is an urgent need not only for Primary Health Care centers but also for counseling and referral services in our villages.