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.

http://www.hopeforaaditya.org/

http://www.addiandcassi.com/

MERITS OF A KERALA TOWEL

My friend Sujin is an experienced amateur photographer. He faithfully and patiently tries to drill into me the nuances of photography. And he's beginning to understand that it's not an easy task. Yet, he courageously and generously plods on trying to make a good photographer out of me. "Try and use a Kerala towel to diffuse harsh light. It gives a `soft-box' effect," he said. So, I promptly went and borrowed (without her knowledge) my mother's fine cotton, meshed, kerala towel (she is fanatic about it) and tried to experiment with `Sujin's Soft-Box'...but there was no way i could clip the towel, so I held the towel in my left hand and shot the picture with my right hand. I don't think this is the photographic effect Sujin had in mind when he asked me to do what he asked me to do. However, I should say that the towel infact forms a fetching background!

SUNLIGHT

For me there is nothing more exciting than shooting in natural light. You cannot dictate to the Sun. You just got to be assured that he will give his best. And he never fails. It is exciting to see how sunlight is constantly changing by the minute and gives a different hue to everything it shines upon, again by the minute. The following photographs are a classic example