Parents of nine-month-old boy will try to find a suitable donor on bone marrow registry after they were found to be imperfect matches.
Sick child en route to India for transplant
ABU DHABI // After bad news from doctors - and against their advice - the family of a child with a rare genetic disease is flying him to India to access a bone marrow donor registry, saying it may be the only way to save him.
Mohammad Yousaf, who is nine months old, suffers from Omenn syndrome, a severe combined immunodeficiency disorder which affects fewer than one in 100,000 children. His parents, Anzar and Shamsa, learnt recently that they are only partial matches to provide him a transplant. So, although doctors say their son's lack of an immune system makes it dangerous for him to travel, the couple have decided to do whatever it takes.
"The doctors told me that I was taking a risk, but I am trying to save his life," his father said. "I know we are taking a risk but we are only partial matches and I need to find him a match as soon as possible." Mohammad's doctors at Sheikh Khalifa Medical City say he is vulnerable to even the mildest of infections. The parents have already lost two children - both girls - in their infancy to the same condition.
Dr Alaa Shaheen, a senior specialist paediatrician at Al Baraha Hospital in Dubai, who is not treating Mohammad, said the parents of Omenn syndrome sufferers must acknowledge the risk of taking their child on an aircraft. "To get a transplant, he needs to go abroad, and to go abroad he needs to go on a plane," he said. "This family have to think 'what are the benefits and what are the risks?' It is their decision.
"They must try and keep the baby isolated, away from other people. Staff should wear face masks if they are serving him to prevent infections from spreading. "Viruses and bacteria that would be very mild for a normal child could be harmful or lethal for him. It is very important that he is kept isolated and away from infection." Mohammad's father said he had made necessary arrangements with Etihad Airways. He said special medical equipment would be allowed on board, including an emergency oxygen supply for Mohammad if he needs it. The crew has been alerted to his travel needs.
The tickets were provided by an anonymous well-wisher after The National reported Mohammad's condition last week. "A lot of people have come to meet my baby in the past week," said Mr Yousaf. "It has given us hope." He flew to Trivandrum last night, where he has arranged for a local hospital to give him a reference letter to expedite the bone marrow transplant at Vellore Hospital, a private medical centre in the state of Tamilnadu.
The hospital said it would charge 1.5 million rupees (Dh114,000) for the operation. It also operates a donor registry from which the parents hopes to find a match for their son. So far, the family has received Dh18,000 in private donations. @Email:firstname.lastname@example.org