Bone marrow transplant for 14 year old


I’m Ronald Jesse Abel Ganta. Born a normal child, I was only eight months old when I was diagnosed with Hyper IGM Syndrome, a rare, one-in-a-million, and potentially life-threatening genetic disorder that severely compromises the immune system.
One night when I was a 8 month old baby, my body had turned completely blue and my parents rushed me to the hospital as I was finding it hard to breathe. Under medical observation for 48 hours, the doctors did not give my parents any hope. Somehow, I got through. I’m 14 years now and still battling for life.
Doctors have advised I have immunoglobulins administered all my life. Each dose of IVig (Intravenous Immunoglobulin) is effective for an average of 3-4 weeks. I have been getting these doses regularly, and then once in only three months because of the high costs they incur. Getting them administered is a slow and painful process taking several hours. I suffer from severe discomfort – wheezing, nausea, and headaches – during the procedures.
In June 2016, I had another brief encounter with Death. This time I was in the hospital for two months. I had fallen very sick and the doctors had put me on the ventilator for 25 days. My body felt like a pin cushion with needles poking into them. With a tube inserted into my mouth, I was unable to speak and had to resort to sign language and gestures to communicate.
This has happened so often that I have lost count of the strips of medicine I’ve had to take, the saline drips, the tubes inserted into my body.
My Dad John Emmanuel and my Mom Nirmala, have been the source of constant love, support, and care. My Dad, though a postgraduate, is unfortunately unemployed as he himself suffers from Sudden Sensorineural Hearing Loss (SSHL) and has a bad heart condition too, for which he had to undergo a cardiac bypass surgery a few years back.
My Mom, a postgraduate too, works as a teacher at a private school near our home. With her meager salary, she has been running the house and paying for my frequent medical expenses. It is only a miracle that she has been able to sustain our household so far. Apart from working at the school, she has had to take care of me and my Dad, a hands-on Mom 24/7.
Right from my childhood, I’ve never had the opportunity to go out and play with kids my age due to my weak immune system. With my condition, I have hardly been able to attend school regularly. But I’m only 14 years old, and there is so much I want to achieve. I’ve always set my own standards and I try to better them. Over the years I have kept myself occupied by reading and learning by myself. At the age of four, I started to write short stories and poems. When my Mom gifted me a set of watercolours and crayons, I fell in love with sketching and painting. Adults who saw my sketches would remark about my eye for detail.
I was drawn to computers from a very young age and taught myself how to operate them. I won a gold medal, having secured the first rank in the National Schools Computer Science Competition (NSCSC) held at Chennai. I also was placed first in the Andhra Pradesh State Level Science Talent Search Examination, conducted in 2013. In and out of hospitals, I had never attended a Computer Science class at school and my Principal and teachers were surprised at the results.
I developed a keen ear for music and started to play the keyboard at the age of three. I still play it at my school assembly whenever I get a chance to attend. I’m a multi-instrumentalist and can play both the keyboard and the mouth organ at the same time with ease. I’m now learning to play the guitar. As I grew up, I also learned to cook, helping my Mom in the kitchen. Sometimes when my Mom falls ill or is out, I surprise my parents by making Biryani for them.
During all this, I’ve also had to endure sleepless nights and constant pain. Hyper IGM Syndrome is a very scary and painful immune disorder. There are days and even weeks when I suffer from ulcers and lesions in the mouth. Eating becomes a torture during those periods. My skin keeps getting dry often leading to constant itching. Arthritic pain in my joints is a nagging problem, and sometimes even mobility becomes a laborious task for me.
Hyper IGM Syndrome is termed as very rare. In India, only 50-100 cases have been recovered so far. Bone Marrow Transplant is the only solution to my medical condition. We have been looking for a donor for over ten years now and it was only recently that we heard from our doctor that a 10/10 fully HLA (Human leukocyte antigen) matched unrelated donor (I have no other choice as I have no siblings) is now available. This is wonderful news. With a transplant, the doctors think there’s a glimmer of hope for me to have a recovery and lead a normal life.
However, the medical expenses are a mountain to climb. They roughly work out to Rs.30 lakhs (46, 000 USD). I know this figure is way beyond the financial means of my parents. Apart from the sleepless nights and constant worry that my Mom has had to endure, she has spent all her savings on my treatment for all these 14 years.
The doctors want to perform the operation as soon as possible. I’m racing against time but I have not given up. I hope that people like you reading this can empathize with my situation and can lend a hand to my cause. I earnestly require your support in my time of need. This is my only chance to live life like a normal kid.
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5th July 2018
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