Kota, March 2020: The plight of rare disease patients continues to worsen in the State of Rajasthan. Mr. Rafiq Mohammed, father of 3-year-old Zaheer suffering from Gaucher - a rare disease, is tired of the prolonged wait for treatment. Mr. Rafiq runs a small Kirana shop in Shreepura area of Kota city.

Gaucher disease is the most common Lysosomal Storage Disorder (LSD) in the group of Rare Diseases. This is a severe and chronic condition caused due to dysfunctional enzymes and is often life-threatening.The deadly rare disease requires treatment in the form of Enzyme Replacement Therapy to survive.

Mr. Rafiq had filed a writ petition with the Rajasthan High court in January 2019 to seek help from the Union Government for treatment support. On 13th September 2019, the court ruled in favor of the patient and sanctioned treatment support from the State Government. Despite the judicial orders the State has not released the allocated funds for the patient to receive treatment at J K Lon Hospital as mandated in the court order. This has led to deterioration in Zaheer’s condition due to lack of treatment.

The bereft father Mr. Rafiq said, “As a parent, seeing your child suffering from any disease is always very painful. After an entire year of fighting for treatment support, the High Court of Rajasthan ruled in our favour and we were assured treatment. I have already lost my daughter Parveen Nisha to this dreadful disease and I am still waiting for the treatment to begin for my son. I appeal to the State Government to expediate the release of funds for the treatment of my son.”

Advocate Mukesh Kumar Verma said, “While the judiciary has understood the urgency of providing treatment, a faster approach needs to be taken into consideration for these patients. The delay in treatment can lead to worsening of their condition. The onus now lies with the State Government to ensure immediate treatment initiation for Zaheer as everyday counts.”