Boy, 10, with body of 2-yr-old, problems of senior citizens

Nagpur: A 10-year-old boy from Yavatmal recently came to Government Medical College and Hospital (GMCH). The doctors had to ask his parents the boy’s age twice, since he was so tiny that he could have been a two-year-old. His face, however, had the look of a wizened old man. The boy was suffering from a rare genetic condition that not only inhibits his normal growth but also causes various organs to deteriorate.
Karan Deshmukh from Dongargaon, Yavatmal, suffer from the progressive, degenerative genetic disorder called Cockayne syndrome. Being poor farm labourers, it has always been difficult for Karan’s parents to seek treatment for him. Doctors at GMCH believe that this would be the first identified case of the rare disease to be reported in Central India.
“We were told that the parents had consulted other doctors earlier and knew what the child was suffering from. They were given genetic counselling, as both of them were carriers of the gene that causes the disease, there is a chance of one in four of their kids having the disease,” said Dr CM Bokade, head of the paediatrics department of GMCH.
Despite knowing that they might not be able to do much for their kid, the parents think of him as a blessing of God and say that they will do everything in their capacity to make his life comfortable. “With our limited resources, GMCH is the only good hospital where we can bring Karan for this. This time, we brought him to Nagpur as he was finding it difficult and painful to walk since the last few days,” said his father Marutrao Deshmukh. Karan’s mother remembers him suffering from pain since a very young age.
When Karan first came to GMCH, the doctors didn’t know what his affliction was. They ran several tests including CAT scan, MRI and several pathological tests. After this, they started looking up medical journals to understand what Karan was going through.
“As the boy suffers from a degenerative disease which is incurable, nothing much could be done. We have suggested that parents get him regular physiotherapy and use equipment to help his weak eyesight and hearing,” said Dr Bokade. The boy was discharged a few days back from GMCH but would return subsequently for getting hearing and visual aids that he has been advised to use.
Since it is a very rare condition, the family cannot seek any benefit under the RGJAY. Dr Bokade and Dr Sandeep Chourasia from the paediatric department of GMCH have been encouraging them to continue treatment and have been considerately chipping in whenever required.