“Your daughter has a rare disease. In fact it is so rare that no one else in this country has this disease.”
He heard the grim words and felt the world spinning around him.
I was thinking of this father today. This father whose only child was diagnosed with a rare disease. A disease that had not affected anyone else in his country.
The World Health Organisation defines a rare disease as one that affects less than 6.5-10 in 10,000 people. His child was diagnosed with Pompe disease – a rare genetic and neuromuscular disorder, after 7 years of desperate visits to almost 50 hospitals all over the country. Born as a normal child, this affected her at seven years of age. What was he to do? No awareness existed and the treatments were very expensive.
Selling all his personal assets to fund her treatment, he went from hospital to hospital. He found out his child was not alone, there were others too having different types of rare diseases. There are 7000+ Rare Diseases in the world, and there are treatment protocols which are long drawn out and expensive, sometimes with only one drug manufacturer globally. Patients needed to often travel to dozens of hospitals to get this diagnosis, as this father did.
Even with all the challenges, this dad managed to keep his child alive.
He decided to setup a non profit organisation in his country- India- to create awareness of Rare Diseases. There are certain risk factors in parents that could cause this, as 80% of rare diseases are genetic and could also result from marriages among close relatives. There are specialised treatment protocols for which help is needed.
No parent could manage this alone. He did not want others to go through what he had, without information or help.
He decided to take these efforts to the public too. For the past few years, every last weekend in February, people sign up to run, walk or cycle 7km to raise the consciousness and raise funds for this cause.
Seven thousand participants took part in the first event held few years ago with each participants’ bib having the name of a rare disease printed on it. As a result of such efforts, the government is taking notice and this has become the life mission of this father.
During my run (which started at precisely 7am) to support this cause, I marvelled at the way this father had dealt so positively with the challenges he faced with his daughter’s health. In the process, he went beyond trying to save his daughter, he wanted to help others too. He is a real dad.
During the run, there were moments when I crossed other runners and we waved at each other. In a small way, I was creating awareness of Rare Diseases by running with my event Tshirt on.
Moments of reflection came to me during the run. I was thinking of my own role as a father and the children that I am blessed with. All children are precious gifts to their parents. They are our treasures to nurture to the best of our abilities, no matter what.
Thank you Prasanna Shirol, for showing us that each parent has their own special mission in life. To do all they can to nurture their children.
Visit www.ordindia.in for more information on rare diseases.
By Tom Thomas Maliekal
Tom is an Indian entrepreneur with interests in technology, manufacturing, reading, scribbling, running, faith and family (not necessarily in that order) He was greatly inspired on his journey of fitness by the amazing transformation that the Snehagram Community – www.snehagram.org – has made in the lives of HIV infected youngsters, by shaping them up into some of the most outstanding amateur runners in India.
