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Research, Education and Family support for WAS families worldwide
Our journey with Wiskott-Aldrich Syndrome began in 1999 in California where Amal was diagnosed and we have been blessed with many individuals who have made our path easier. Amal was diagnosed at Children's Hospital of Orange County, CA and we are thankful for Dr. Diane Nugent, Dr. Jorge di Paola who diagnosed Amal and took care of him until we moved to NC when he was 3 1/2 years old. I am very thankful for the guidance provided by Dr. Jasjit Singh, who took the time to consult with top immunologists in the country and worked up Amal to ensure that he was indeed an XLT patient. Back then there were no support groups and we did not know anyone else with the disease. My good friends and colleagues, Dr. Teresa Hollander and Dr. Mohini Sinha were my support group and sounding board in dealing with the everyday issues that Amal had with his low platelets, colitis and severe food allergies. We were blessed to have a close circle of friends and neighbors who shared our lives with us and helped normalize life for the girls. Their kindness and help eased our own burdens and helped us do better for Amal and for the girls. We owe Susanna Heapy, another friend and colleague who put us in touch with Dr. Kurtzberg shortly after Amalan was diagnosed. At a time when all seemed bleak and hopeless, Dr. Kurtzberg rallied us back on our feet to seek the best for Amalan. It was a call that restored our faith and brought back hope and I am thankful for the call even after all these years. It strengthened our decision to move to North Carolina years later and have Dr. Kurtzberg take care of Amalan.
When we found out that our girls were not a match for Amal, we consulted with Dr. Candotti and Dr. Ochs as to the next steps for Amal. Ever since Amal was a year old, both of these physicians have spent innumerable hours with us, sharing all that they know about WAS and the latest developments in research. They have counseled us when we were torn about whether to transplant Amal or not. Both of these physicians have been the epitome of kindness and caring. We are indebted to them for all the care that they have showered upon our family.
We moved to North Carolina in the summer of 2002 and Amal has been under the care of Dr. Buckley and Dr. Kurtzberg and Sue Wood who has been his Nurse Practioner since that time. They help us with every aspect of his care, from tussling over transplant decisions to the more routine cares of the day. With their knowledge, kindness and understanding, they are wonderful advocates for Amal, providing him with a loving and caring medical home where he feels safe and comfortable.
Amalan has been blessed with a wonderful school system that supports us in every way. Amal was fully home schooled until the first grade when he decided that he wanted to go to a regular school like his sisters. Ms. Mack who is the Principal of Rashkis Elementary school, Mr. Liles the school counselor, Beth Murphy who was the school nurse and his first teacher Mrs. Helen Westland, understood our fears in letting go of Amal and helped us with understanding and kindness. Amal continued to be home schooled, receiving supplementary home bound instruction and was allowed to increase his hours at school as our comfort level increased. Amal's second and third grade teachers' Ms. Meg Johnson and Ms. Cristin Najera and Ms. Sink took wonderful care of Amal and he began attending school for most of the day by 3rd grade. His 4th graqde teachers at Duke School, Grechen Sahratian and Steve Waterman helped Amal and us to continue to grow and move forward. His 5th grade teacher Mr. Gary Falgout and the wonderful parents and students in that class helped Amal to grow socially and he formed a great set of friends. These friends continue to be there for him as he is transitioning to middle school and we are grateful to these great kids and to their parents who help Amal be so happy at school. The Aquatics Director at the UNC Wellness Center Matt Stout, his swim coach Steve Miltze and his swim buddies have made this place a haven for Amal to regularly exercise while having fun.
Our families and friends have stood beside us every step of the way, sharing our joys and tears, helping us physically, morally and emotionally. In particular my parents, Mrs. Janakavalli and Mr. Srinivasan Sundararajan and Sridhar's sister, Selvananyaki have spent many years away from their homes in India, flying in to be with us in America at times that have been particularly challenging. Their strength and love through it all has helped us through these difficult years. Amalan is the cherished grandson of Sridhar's father Mr. Srinivasa Iyengar, who passed away a few years after Amal was born. His love and blessings will always be with Amalan wherever he is. We feel the constant and sheltering love, blessings, prayers of Sridhar's mother Mrs. Ranganayaki, helping us get through the worst of times. If we are in place today where we are able to help other people, we owe it all to our families.
Sridhar's sister Dr. Padma Anand has, over the last several years been a source of comfort, always available to talk with me on the phone and Amal has developed a loving relationship with her. My brother in law Mr. Ananda Gubbi checks in regularly on all of us and provides us with all that is going on in the pharmaceutical industry for bleeding disorders. My brother Kishore and sister in law Sahana are always there for Amal, flying in to be there in person to bless him on all the important occasions in his life. Sridhar's brother and sister Mr. Sampath Kumar and Mrs. Goda Krishnan and my sister in law Jyothi have been there with us is spirit, all these years with constant prayers and good wishes for Amal. My brother in law is working with the Rotary Club in India to set up a Bone Marrow Registry to help children such as Amal who do not have a life saving match.
Amalan's grand uncle Mr. Kris Radakrishna is Amal's adopted grandfather in the U.S. and calls regularly to check in on all of us, providing us with bits of the latest medical advances for bleeding disorders. Our extended families have been very much a part of this support network with constant prayers for Amal, supporting us in numerous ways. If we are in a position today where we are able to help other people, we owe it all to our families. Our family friends and the many teachers and friends we have at the Sanskar Academy (Hindu Sunday School in Morrisville, NC) have supported and encouraged us all these years. They have made Amal a part of their own families and provided Amal with another safe place to grow in.
Over the years our lives have been touched by many other people whom I have not listed - it is their kindness and love that carries us forward and we are forever grateful for their support.
With Many Thanks to each and every one,
Sumathi
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