Wednesday, December 31, 2008

BRAVE MOTHER SON DUO

I have known Aaditya from the time he was a tiny tot. He is my neighbor and friend Tasneem’s little boy. They are the bravest mother and son I have ever come across in my life.

(Better Days: Aadi singing`Country Road' along with mom Tasneem)
Aaditya is afflicted with a rare and fatal childhood disease called Niemann-Pick Type C (NPC). Frequently referred to as `Childhood Alzheimer’s,’ Niemann Pick Type C is a genetic lipid (cholesterol) storage disease that causes progressive neurodegeneration of the brain just like Alzheimers, Parkinson’s or ALS does to adults. Only 500 children worldwide have this horrible condition.

Aadi was slowly but steadily going down hill, even as his parents ran from pillar to post trying to find a cure for this disease. There's no known cure for NPC.
Two months back Aaditya seemed like he was losing the battle. He lost his ability to speak. It was toughest on mom Tasneem to come to terms with the fact that she might never be able to hear her son speak. Aaditya lost the ability to walk, sit and even swallow food.
Then came the breakthrough....

(Aadi - a week after his operation)
Last week history was made as the first ever intracranial stem cell transplants ever conducted on children was performed on Aaditya at the BGS hospital in Bangalore. The procedure was approved by the Indian government a few weeks ago. This treatment is not available even in the US.

A few weeks ago we were losing Aaditya. But today, after the path-breaking procedure we can see slow, but definite signs of improvement in his condition.

(Mother and son sharing a quite and precious moment)
I have been filming Aaditya for many months now for a documentary on NPC. I remember asking Tasneem, “Why do you allow me to film such personal moments of your life? Why do you permit me to film your son’s life ebbing away?” And she replied: “I know and hope that my son will get better and lead a normal life one day. I also know that His will be done in our lives. But amidst all this I shouldn’t forget that there others like me out there.... There is a bigger purpose here….I’m sure it’s not just about Aaditya and our family…definitely not.”
(Tasneem -the activist mom and caretaker)
She and her sister Duriya are relentless in their pursuit to reach out to as many NPC families as possible from around the world. Here’s to the brave mother and son… Let more NPC afflicted families benefit from this path-breaking medical procedure.

8 comments:

Tasneem said...

Ilove it and I love you!!
Though I should say that the activist is Duriya and te caretaker is Sumathi.

Carrie said...

I am so glad there are signs of improvement after the surgery!!

Purnima said...

HI Sudha,

This is such a beautiful post. And I couldn't agree more with you about Tas and Duriya being the bravest and biggest fighters out there.I am sure one day we will His will be realized and Aadu and other kids will be cured. It's so heartening to know that Aadu is showing signs of improvement.

Keep sending the updates. I look out for an email from Duriya everyday.

Loads of hugs to all in Bangalore!

Purnima.

prabhakar said...

Thanks Sudha for the update. What a nice way to start 2009 - with hope and confidence. Hats of to Tasneem and Ravi and more so to Aaditya. As Tasneem, says it is the love and affection of all concerned like Duriya and Sumathi.

Not to forget, the medical team which has taken such a pioneering lead.

My best wishes to all.

carlhenry01 said...

Hi....my son Calum who is 4 suffers from NP-C.I cried when I read this.......real hope at least.Please, please keep us updated at every step.
Respect to the medical team too.
A great way to start 2009.

Best wishes to Aaditya and his family.

Hope for Aaditya said...

Sudha,

I love your post! It has so much emotion. Love the pictures too! I would like to put some on my website if you don't mind.

Thanks,

Duriya

hema pukaley said...

sigh!just yesterday i was wondering and knew there was more than just creativity that was drawing me sudha and now i know tasneem and duriya in her life which i can so easily associate with the pain cos i had a son who was born with "biliary atresia" (defect of the liver, one in 10,000 babies) and the battle was for 6 years until we got the government to agree on liver transplants in India at st. johns ( the foreign one was unaffordable) the accident we had on the bike while we were taking pranav to see the air show and the ok from the government came at the same time, we lost him ...take care tasneem , believe it and it will happen , duriya will be fine..lots of love

pRasad said...

indeed heart touching!..

Very glad to know Aaditya got second life and his condition is improving ...

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