Jaipur: Vegetable vendors from the 37-year-old Mohammad City, among the five who tell their trials, they have faced many years in a letter to the Minister of Chief Justice Gehlot urgent him to regulate the treatment of rare diseases for their children, which is quite expensive.
“My five-year-old son needs an enzyme replacement therapy, which is very expensive.
It is given according to the weight of the child.
My child weighs 15kg and his care will cost around Rs 65 lakh per year,” said Rafiq.
He was not the only parents, but there were other people who ran from the pillar to the post to seek help for treatment.
They write to CM, “We want to distract you today’s health condition of some of the eligible patients, who have been waiting for institutional support from the state government for a long time.
Despite the guarantee of the state that the budget provisions will be made to support the patient This young patient, the lack of decision has put their lives at risk.
“At least two of the 10 children, who have been seeking state assistance, died last year while waiting for support from the government.
Nine of these 10 patients – all in the age group 1.5 to 10 years – has been diagnosed with gaucher disease, which is a condition that is reduced, chronic, weakening, due to the buildup of certain fatty substances in certain organs, especially the spleen and heart.
Patients with this rare condition require a long term, special care and management through enzyme replacement therapy.
A automated driver in Churu, six-year-old son Jamil also suffered from Gaugher.
“I lost my daughter, who suffered from Mavercher and now my child has the same disease.
My child needs an annual 50 lakh Rs and when he gets weight, the cost of care will increase.
At the individual level, it is difficult to regulate the cost of care, which is why, We need to improve support, “Jamil said.
Parents of these children explore all options that might seek care, but it didn’t work.