7-year-old Ahmed suffers from a life-threatening genetic disorder

He smiles shyly as his parents’ haggard faces and tearful eyes tell a different tale.

Seven-year-old Mohammad Ahmed suffers from a life-threatening genetic disorder, Gaucher’s disease, not many would have even heard of it. He still has a distended abdomen, swollen lymph nodes and black-brown skin pigmentation and thin limbs, all signs of the disease that has already claimed lives of four of his siblings – three boys and a girl.

Requiring Rs.5 lakh worth Enzyme Replacement Therapy twice every month, the exorbitantly expensive treatment made his father Md. Sirajuddin, a rickshaw-puller, take the government to the court seeking financial assistance for his son.

Ahmed, who studies in Class II, enjoys watching cartoons, is a die-hard fan of Bollywood actor Salman Khan and dreams of becoming an army man.

Fauji banonga. Desh ki raksha karna chahta hoon (I will become an army man. I want to protect my nation),” he says, giggling while seated between his parents at their modest rented house in West Delhi.

“He wants to have a body like that of Salman Khan,” says his mother Anwari Begum, who adds that her son is everyone’s favourite at his school.

After two of their children died of Gaucher’s, Sirajuddin was advised by the doctors at Safdarjung Hospital not to have more children or to remarry. He, however, was committed to his wife and together they decided to take the risk of extending the family. Ahmed was born on December 12, 2007. After Ahmed they decided not to have more children.

While the minor knows he suffers from a life-threatening disease, Sirajuddin and Anwari Begum lose all self-control when they recall how Ahmed once said he would not survive.

“We had no money for his treatment. Even the Prime Minister’s Office did not help. Ahmed’s condition was deteriorating. I had already lost four children. One day Ahmed said he would not live long as he had seen two others dying,” they said.

Ahmed was diagnosed with Gaucher’s as an infant. He developed fever and his abdomen started swelling. His weight came down to mere 13 kgs. at the age of six. Sirajuddin was then told by the AIIMS doctors that the treatment would cost Rs. 5-6 lakh every month for the rest of Ahmed’s life.

He came to Delhi from Jharkhand to seek aid from the Prime Minister in June 2013. “I got no response and was crying by the roadside when a media-person came up to me, listened to my problem and connected me to activist advocate Ashok Aggarwal who launched a legal battle in the Delhi High Court,” recalled Sirajuddin.

Following this, the government disbursed Rs.5 lakh as one-time aid and an ERT was done at AIIMS last year. Thereafter, Medanta Hospital came forward and gave him another ERT in March 2014 and Ahmed gained weight and started looking healthy. The High Court lawyers also collected money which has been given to AIIMS for another round of ERT this month.

Sirajuddin and Anwari Begum are hopeful that Ahmed would grow up to be a bright young man. They derive their strength from real-life stories of other Gaucher’s patients who are leading normal lives and have families of their own.

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