Aarnav was born on March 2, 2012, a robust 2.5Kg, baby boy. After several hours, he was diagnosed with Umbilical Hernia, a protrusion of intraabdominal contents through a weakness at the site of passage of the umbilical cord through the abdominal wall, for this he underwent a surgery at the age of just 1 month. He was also diagnosed with Jaundice and was on forced ventilation for several days and in the NICU for a week and was considered totally recovered – a huge blessing.
He continued to grow and laugh, but was always plagued with “minor” things, like many colds and loud breathing, interrupted sleep. What started as a casual checkup for a mild bout of wheezing turned out to be a nightmare for his parents. After several visits to doctors Aarnav was diagnosed with MPS-VI disease (the scientific name for which is mucopolysaccharidosis Type VI or MPS-VI). Symptoms include enlarged head, thick lips and short stature. Patients may be wheelchair-bound by age 15.
In order to live, Aarnav needs to undergo an enzyme replacement therapy which require injecting the drug on weekly basis into his body for rest of the life. The drug is not available in India which is developed by BioMarin Pharmaceuticals, a US drug company, medicine is very expensive which costs annually around $365,000 and needs to be imported from outside India.
An Inspiring Family
Aarnav's family is remarkable. His parents, Chhatrapal, Rajani and grand parents, are truly inspirational and have maintained the most amazing attitude throughout this ordeal! For the past 6 months, they have split their time between the hospital and home. Rajani is dedicated to Aarnav full time to managed treatments and visits to the doctors, Chhatrapal is countinue to work to afford family expenses.
This fundraiser is to support Chhatrapal and Rajani and the entire family financially - to allow them to afford the cost of the ERT (enzyme replacement therapy) and the additional childcare coverage they need. This will enable them to better focus on Aarnav's fight and not worry about the financial stress that comes with no fixed income.