Sorry to post a damper on a happy and colourful blog. But this cause is very close to my heart. I have lost a son to a similar condition and my son now also has it. So I understand the problems of parents, particularly staying in India. There are still very few centers in India which can diagnose this condition (Vellore is probably the only reliable one) and there are only 5 to 6 centers in the world which tries to cure it by bone marrow/stem cell transplant. Here in UK the IVIG refered below is free, but I understand they are very expensive in $ terms. This condition is popularly known as the "bubble boy" syndrome due to the 2001 movie "bubble boy".
So I request all of you to please read the appeal at the link at the end and help Mrs Chawla in whatever way you can. And also if you could please forward the following to your friends with a personal note, it will be very helpful.
Mrs Rubby Chawla, is faced with a crisis. Her only surviving son Rishi (15 years) suffers from Primary Immunodeficiency Disorder (PID). She lost two sons to this genetic disorder. Rishi has been undergoing IVIG therapy since he was 3 yrs old.Suddenly the prices of IVIG medicines have hit the roof. It costs her nearly Rs 75,000 for a monthly dose of medicines. She cannot afford it, as her husband is in the process of setting up a bakery business in Bhubaneswar.The boy is otherwise fine and active like other schoolgoing kids.
Please read the appeal on this web-page. The details of how you can help her you can find here. http://appealrishichawla.wordpress.com
5 comments:
Kausty, aap ka post padh kar aankhon mein paani bhar aaya...
I was sorry to hear about your tragedy, Kausty.
I read the link you sent on Rishi Chawla.
Before I go ahead with the issue, I'd like to know if you know them and have verified the authenticity of their case.
Do let me know.
Regards,
Tasneem
Mrs Rubby Chawla was a schoolmate of a very close friend of mine from MBA school. So I trust that the case is genuine.
Dear Kausty,
Very sorry to hear about your son... Life can be quite harsh at times... I can understand your feelings.
Why feel sorry about posting this message, Kausty? Amongst us if we cannot share our emotions and feelings then what good is this blog? Is it only to share good times? No! Not at all...
My father passed away in Feb 1994 (miss him a lot...) when I was posted in Bangalore. He underwent open heart surgery but could not make it beyond ICU. His blood group was AB -ve. Quite difficult to get. But then, believe it or not, people - none i knew! - were so helpful that they came on their own, donated blood and left on their own. One family where we went late night to enquire if their daughter could donate blood realised that Vani and I had been out for long and probably not had dinner (which actually was the case) forced us to eat some thing... Never knew strangers could be so helpful… It’s a beautiful world actually. If one forgets a few stray cases, folks are every willing to help... Will do the needful regarding Mrs.Chawla.
Take care my friend & God Bless...
Vimal
PS: Like Tas, even i wanted to ask you the same. Since you clarified, I did not raise the matter.
I have apprised my friends about Rishi. Hope something concrete comes through. Can't the government subsidize the cost of these life saving drugs? Why doesn't medical insurance defray these costs? Life is so tough....
I've been running around in circles attending to my son who underwent surgery on both his toes for ingrown toenails, today. If such a minor thing could put me so off gear, I can imagine what you guys must be going through.
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