"When I saw Kushal for the first time after he was born, my joy had no bounds. I thought to myself that I would give this child everything I can in life. His twinkling eyes gave us a reason to smile every time we saw him”, says Karthik – Kushal’s father.
Life was going well for us as new parents to Kushal until he turned six months old.
"We started noticing respiratory issues with him, wherein he had difficulty in breathing. Slowly, we began seeing abnormalities in his chest, spine, abdomen, and forehead.
This was just the beginning of our ordeal. After consulting several doctors across cities, we got the news we hope no parent ever must-hear, adds Karthik.
Kushal was diagnosed with a rare genetic disorder called the Hurler Syndrome. Hurler syndrome is the most severe form of Mucopolysaccharidosis - a rare lysosomal storage disease characterized by skeletal abnormalities, cognitive impairment, heart disease, respiratory problems, enlarged liver and spleen along with reduced life expectancy.
As of today, there is no given cure for Mucopolysaccharidosis. It's a fatal disorder that progresses very fast with age and often leaves the patients in severe pain and physical impairment.
The only alternative we have been given is a Bone Marrow Transplant surgery and an enzyme replacement therapy. The treatment costs upwards of Rs.51 lakhs and we have already spent our savings and more than two lakhs in only diagnosing the disease.
"Each passing day, we can see our son losing the battle to life. There has been a significant loss of hearing and vision already. We are fighting against time to save our only son.
Every single contribution, big or small, matters to our family. There is no way we can otherwise afford this treatment."
Please come forward and help us save Kushal. He deserves a second shot to life.