Rajasthan: Parents seek CM’s help for treating ailing kids

JAIPUR: A vegetable vendor from Kota, 37-year-old Rafiq Mohammad, was among five who narrated their ordeal they have been facing for years in a letter to chief minister Ashok Gehlot urging him to arrange treatment of rare diseases for their children, which is quite expensive.
“My five-year-old son requires enzyme replacement therapy, which is very costly. It is given according to weight of the child. My son weighs 15kg and his treatment will cost around Rs 65 lakh per year,” said Rafiq.
He is not the only parent, but there are others who are running from pillar to post to seek help for the treatment.
They wrote to CM, “We wanted to bring to your attention the current health condition of several eligible patients, who have been awaiting institutional support from the state government for a long time. Despite assurances from the state that budgetary provision would be made to support these young patients, lack of any decision has put their lives at risk.”
At least two out of the 10 children, who had sought the state’s help, passed away last year while awaiting support from the government.
Nine out of these 10 patients – all in the age group of 1.5 to 10 years – have been diagnosed with Gaucher disease, which is a serious inherited, chronic, debilitating condition, caused due to a build-up of certain fatty substances in certain organs, particularly the spleen and liver.
Patients with this rare condition require long term, specialised treatments and management through Enzyme Replacement Therapy.
An auto-driver in Churu, Jamil’s six-year-old son is also suffering from Gaucher. “I lost my daughter, who was suffering from Gaucher and now my son has the same disease. My son requires Rs 50 lakh yearly and as he gains the weight, his cost of treatment will further increase. At individual level, it is difficult to arrange the cost of treatment, which is why, we need govern ment support,” said Jamil. The parents of these children explored all possible options seeking treatment, but to no avail.