This web site is the collaborative effort of a number of people - physicians, patients and family members. Many of these people have worked behind the scenes to make this web site come into being and I would like to thank each and every one who has contributed.
Sridhar(my husband) has been asking me to put up a web site for WAS for years. However, it was not until the fall of 2008 that we finally got started. It began with a chance discussion with Amal's physician of what we went through prior to and just after Amalan's diagnosis in 1999. It was difficult to relive those months that had been agonizing for us. A few days later I chanced upon Jeff's video. I was in tears as I watched and re watched it. The video brought back memories of our own experience with Amalan, the difficulties we faced prior to his diagnosis and the months after, until such time that we connected with Dr. Candotti and Dr. Ochs. It brought home the pain that Jeff and his family were going through - just to find a physician who could help him with a rare disorder. I realized that out there were other WAS families going through this and it compelled me to do something to make it easier for them. Dr. Candotti and Dr. Ochs heartily endorsed the idea of putting together a web site and the project was on !
The last ten years have not been easy for us, but we have been blessed with a great family, supportive schools and friends and wonderful physicians who have made things easier. We are very fortunate to have Amalan under the care and guidance of Dr. Joanne Kurtzberg and Dr. Rebecca Buckley at Duke Hospital who are our pillars of strength and support. With their professionalism, dedication, and compassionate care, they have not just taken care of Amalan's medical needs, but have personally guided us on allowing him to have as normal a life as possible. Their care and support has helped keep Amal's health stable and given me the motivation to share the experience and knowledge gained over the last decade in the hope that other families with WAS can better cope with the disease. Despite their busy schedules these physicians have graciously offered to review the site and offer their advice and support (review in progress).
This web site would not have been possible but for Dr. Fabio Candotti from the National Institute of Health and Dr. Hans Ochs from Seattle Children's Hospital, both of whom we have come to depend upon at all times. They continue to be our WAS consultants and advisers as they have been since Amalan was a year old. With the incredible depth of knowledge that they have, combined with decades of experience with patients with WAS, they guided us through the rough road of transplant decision making. Despite their own busy schedules, they not only made the time to give us advice on how to manage Amals' medical needs, but have also taken the time to support us emotionally at any time that I needed someone to talk with. From the time that this web site was just a seed idea, they have encouraged and supported me, critically reviewing the web site (review in progress) and giving me expert and professional advice. They have been instrumental in helping me put this web site together, offering help from the beginning and helping me get in touch with the right people. Dr. Candotti has spent hours
on the site, taking the time to read over the material on the site. He then took the time to meet me in person and several more hours teleconferencing to correct, improve and clarify my writing. He is in essence a co-author to this site, but he wanted this to be a patient run site and chose to not have his name listed as an author.
We are indebted to the care provided to our family by these four caring physicians. We cannot ever repay them for all that they do for us. We can only hope to pay it forward by helping our fellow WAS families.
Many thanks to my friend, a fellow WAS mom and licensed therapist, Rosalind Cardia, for graciously authoring the section on the Effects of WAS on the Family System. Rosalind Cardia, whom I have now known for years and has been a source of comfort during trying times with WAS. With years of experience with her own son Billy combined with her experience as a psychotherapist she is able to offer me support and encouragement as I go through the ups and downs of WAS. When I talked with her about the site, she jumped right in and happily volunteered to use her experience and expertise to help WAS families. She has been a sounding board for the discussion forum, being a source of information, comfort and voice of experience to many WAS patients.
My heartfelt thanks to Barbara Ballard, who, with her decade of experience with the SCID site was able to help me get the site up and running and is always generous with her time and ideas whenever I need her help. She has been a great source of advice and encouragement over the past few months.
We have been blessed with a very supportive family, wonderful physicians, great friends and a supportive school system. Even with all this support, we have felt at times isolated, afraid and frustrated as we went through the decision making for our son. At such times, it was great to be able to talk with other WAS families whom we felt truly understood what we were going through. It was a dream come true when Marcia Boyle graciously permitted us to set up a WAS Discussion Forum under the IDF umbrella. I am thankful to be a part of this great group of parents and patients and feel supported in many ways. It was in the forum that I first met Bob, a patient with WAS enjoying his 5th decade of life. He has been a source of great inspiration and support to me with in the way he leads his life and words of wisdom that he offers to all of us. I was impressed by the detailed knowledge of the parents and patients who participate in the forum and the detailed topics that were being discussed. This inspired me to put in more into the web site and as a result, the level of information on the web site was notched up.
Elizabeth Garabedian (affectionately known to us as Buffy) from the NIH, who works closely with Dr. Candotti, has always made our trips to NIH warm and welcoming. She went out of her way to print the whole site out, screen by screen and edited the whole site for errors with helpful and thoughtful suggestions on improving the site. Being a former librarian, she worked to ensure that the site followed the proper conventions.
Robin, a fellow WAS mom took the time to read through the whole site and gave excellent suggestions to improve the site. Having a child who had been recently diagnosed with WAS, her insights provided me an important avenue to look at it from that perspective and numerous changes were made based upon her suggestions. Her husband, Todd has been helpful in putting together the disclaimers section, something that was not easy for me to put together.
My thanks to my niece Sree Ratnasinghe who has always taken special interest in Amal and took the time to review the site and offer helpful suggestions to improve the site.
Our children, Mangala, Apoorva and Srinivas are Amalan's loving and caring siblings. Apoorva, being only 3 years older than Amal has been his constant playmate and companion. Their love and care, along with sibling fights and rivalries have provided Amal with an important sense of normalcy and belonging, helping to round off his corners. They have sacrificed their own time and interests, adjusting to the "new normal" in our home, from everyday life activities to modified vacation plans. They have done all of this willingly and uncomplainingly. Once I got going with the site, my kids were shocked to see their mother glued to the computer for hours on end and they have been very patient with me. They pop in regularly to check on my progress, with words of encouragement and they will be happier than me when the site goes live. Mangala helped design the graphics on the site.
Last, but not least of all, my heartfelt thanks to my husband, Sridhar who has been sharing this journey with me. He has been asking me for years to put together a web site to share the knowledge that we have gained. With his computer expertise, he started me off on the site and has been a patient listener, giving helpful ideas and suggestions on how to improve the site. It has been wonderful to be able to just holler for help when I hit glitches. He read through the site, asking for clarifications, making sure that it was written in a way that would be helpful to the interested reader. He took over some of the chores at home during my busiest times, so I could focus work on the site. He continues to support me as we work through the kinks of getting the site up and running in public.