Mumbai teen with rare disease is trying to raise money for others

Mumbai: MiD DAY had earlier reported about how parents of young patients of primary immuno deficiency (PID) are struggling to foot the medical bills, like in the case of four-year-old Aditya Singh from Vikhroli.

We have now come across the case of a teenager, himself a victim of PID, who for the past five years has been running a foundation to save PID victims. Ashley Vanristell (14) from Andheri has been on IVIG (intravenous immunoglobulin) treatment for the past nine years. Ashley, at the age of nine, established Ashley Hypogammaglobulinemia Foundation Trust in 2008 to support children with PID in the city. He has been on IVIG since he was five and has to continue with it for life. His foundation raises money for treatment of kids who belong to families that cannot afford it.

A mere child, Ashley realised that there are several other kids in the city who are suffering from the life-threatening condition and do not have the money for treatment. He decided to set up the foundation and raise money to accommodate the needy kids and facilitate their treatment. "I perform magic shows at charity events and try to raise money for the foundation. My aim is to save as many lives as possible because even I am a victim of PID. The day I go to school, I fall ill for the next 15 days and have to stay at home. I am appearing for my SSC exam privately."

When he was two, he was admitted to a private hospital in the city with pneumonia. Doctors conducted several tests that finally revealed his condition of PID. Ashley's mother Andrea said, "My son was in a very critical condition and we had no hope of his survival. He was admitted after he suffered of pneumonia for the second time. One of the tests conducted confirmed that he lacked the natural immune system within the body."

She added, "While people always complain about problems in their life and give up hope and end their life, my son chose to fight all odds. He always tells everyone that it is very important to live life happily and not let the worries trouble you."Ashley currently requires 17.5 g of IVIG dosage once in four weeks that costs the family a whopping Rs 60,000. Ashley's father, the sole earning member in the family, says his income
 is insufficient to support the treatment.

A lifeline for many
Our reporter spoke to a family fortunate enough to get a bone marrow transplant for their PID-afflicted son, thanks to Ashley's charity organisation. Jeff Nunes (5) had acute PID until last year and was on IVIG for almost two years. After his sister's bone marrow matched, the family spent around Rs 20 lakh and got the transplant done in Chennai. Jeff's father Jerald said, "My son is completely fine now and does not require IVIG any longer. Doctors in Chennai informed us that there could be complications after the transplant but we took the risk."

Other kids currently benefiting from the foundation are Vipul (16) and Ayush (7). Both have been getting IVIG dosage regularly with the help of the foundation for five years. Unfortunately, Sunny (12) who was brought to the foundation in a critical state and underwent IVIG treatment for six months, succumbed to his ailment.

Running out
Now that Ashley has turned 14, he is getting fewer opportunities for performing magic shows and taking up acting roles, which is affecting the fund-raising process for the foundation. Andrea claimed that the foundation is running out of funds collected so far and struggling to find more options. Families of PID victims are wondering if the government would ever wake up and consider this as a serious health concern. Though Ashley claims to have personally written several letters to the Prime Minister's Office and the state health minister regarding the problem that several families are facing, he is yet to receive a reply.

What is PID?
PID refers to a group of diseases afflicting those who are born with a weak immune system. There are more than 120 different PID in the medical literature and over 200 genes have been linked to be the cause or are associated with PID, say experts. Victims of PID require life long therapies including intravenous immunoglobulin (IVIG) infusion, aggressive antibiotic therapies, or bone marrow transplantation (BMT). Primary immunodeficiency diseases occur in persons born with an immune system that is either absent or hampered in its ability to function. While not contagious, these diseases are caused by hereditary or genetic defects and can affect anyone