This website is dedicated to all the patients and families who are coping with Wiskott-Aldrich Syndrome.
Over the years we have had the pleasure of knowing several families dealing with WAS and and it has always been a humbling experience to hear about their lives and how they are coping. What stands out among these patients is their indomitable spirit and courage, whether they are living with the disease or going through the rigors of transplant. I have learned much from these families, who deal with more than their fair share of trouble and still set out to do the best they can to lead a full and joyous life. Our lives have been personally touched by two of these courageous children.
Caring for our own 10-year-old son, Amalan, helps us understand what other WAS families are going through. Like other WAS patients we know, his cheerful disposition and optimistic ways of dealing with his disease has enriched our lives and given us a better perspective on what is important in our own lives. He has had a few bouts of allergic colitis and he needs to be watchful about what he eats. His tendency to bleed easily creates a whole set of day to day issues resulting in restrictions in sports, fun activities and even play dates. The simple act of visiting his grandparents who live in India is beyond his reach for now. In spite of all this, he leads his life with a huge smile, working around his challenges and finding ways to enjoy life. He enjoys swimming, scrabble, Wii sports, reading and has a good set of friends.
We learned about the ups and downs of a WAS family going through a transplant as we became very close to Varun, Ramya and Deepak Bhaskaran. Varun and his dedicated and loving parents, Ramya and Deepak, moved from New Hampshire to North Carolina so that he could have a cord blood transplant at Duke. This gave us an opportunity to get to know Varun and his parents very well as we eagerly watched his day to day progress. Varun was recovering well after transplant, bringing joy to all of us with his beautiful smiles as he crawled and toddled around his home.
Unfortunately, this joy was short lived as Varun succumbed to complications resulting from an infection. Despite being devastated by his loss, Ramya and Deepak courageously go on with their lives and have been recently blessed with a healthy baby boy.
We had the opportunity to meet three patients Aaron, Bob and Mackie and their families in the last six months and it was a joy to meet them. Watching them play around, one would never have guessed what they were going through. We have connected with many such families through the web, around the world and they give us strength and support. It is to all of these patients and their families that this web site is dedicated to.