Girl suffering from rare genetic disorder gets help

According to estimates, Aiyesha Praveen's disease, which is part of a larger group of genetic disorders called Lysosomal storage disorders (LSDs), affects only one in 100,000 people.

Md Rizwan, the patient's father, said he works as a labourer in a factory and cannot afford the cost of treatment which is very high.

So he approached the minister who agreed to support his daughter's treatment for a month which includes Enzyme replacement therapy.

The Institute of Child Health has agreed to administer the infusion at the hospital free of cost.

Children and adolescents suffering with gaucher may experience a delay in growth and development. Bone-related symptoms can be particularly painful and debilitating, impairing a patient's mobility.

Since the disease is extremely rare and the patients are small in number their families face hurdles in locating healthcare facilities and support centres to address their ailment, said officials of the LSD Society of India.