An initiative mooted by the CNN-IBN in partnership with change.org has helped raise funds close to 11 lakhs for the treatment of 12-year-old Arian suffering from the deadly Hunter syndrome.
Arian hailing from Howrah was diagnosed with Hunter syndrome, a rare genetic disorder, which affects the liver, stomach and kidneys and causes limb stiffness. If not given proper treatment, it may cause death.
AdvertisementThe boy earnestly waits for Durga Puja every year when he can play the dhak, but the disease has been posing him difficulty to even move his arms and legs for the past few years.
The treatment drug Elaprase is manufactured only by Shire Huma Genetic Therapies, which is US based.
Arian's treatment cost exceeds a crore a year which is unaffordable for Arian's parents.
However, within a few days of the fund-raising initiative, an amount close to 11 lakhs was able to be raised with help pouring in from different parts of the world.
Hunter syndrome is a lysosomal storage disease caused by deficiency of an enzyme that helps in breaking down and recycling specific molecules in the cells and affects males primarily.
"Hunter syndrome affects less than one in 5,000 people. It is one of the more severe forms of the 45 types of lysosomal storage disorders known medically," said senior consultant and vice chairperson, Centre for Medical Genetics, Sir Ganga Ram Hospital, Dr Ratna Dua Puri.
Sib Sankar Chowdhury, Arian's father, initiated an online petition last September, requesting the government to acquire the drug and make it available at a subsidized rate for the needy. He is planning to collect one lakh signatures from people across the world.
So far, 100,874 signatures have been collected.
It was one of the leading topics on Twitter last week, the campaign strengthened further by Shah Rukh Khan re-tweeting it.
"If the health ministry could take some steps to make the treatment available at a subsidised cost here, Arian can see his next birthday. We are seeking an appointment to meet Harsh Vardhan next week," Arian's father Sib Sankar Chowdhury told IANS.
The boy's father is a great source of inspiration for a number of families who have children battling such rare genetic disorders but are hesitant to go public due to fear of stigma associated with them.
"There are many who fear their children will be ostracised by society... They fear that society will shun them once they know it can be passed on. But we have been vocal about Arian and we hope others will join in our movement," Chowdhury said.
Chowdhury has also pleaded with the government to include other rare genetic disorders in the country's health policy.