Wade’s World Fundraiser
After months of seeing various specialists as an infant, a geneticist tested for what he thought Wade might have–Shwachman Diamond Syndrome. And at eight months old, Wade had a diagnosis. After researching what SDS is, we learned that our son has a bone marrow failure disorder. Saying we were devastated is an understatement. He is at a 45% chance of developing Acute Myeloid Leukemia and if this occurs, he will need a bone marrow transplant in order to survive. Other complications arise with SDS too, such as developmental delays, short stature, neutropenia, pancreatic insufficiency, skeletal abnormalities, liver abnormalities, dental problems, and other things.
Wade is one of the bravest kids we know and what saddens us is that he doesn’t even know a life without SDS. Wade has been through numerous injections, countless blood draws, yearly bone marrow biopsies and different types of therapy that no innocent child should ever have to endure. In addition to being brave, Wade is also the sweetest (and cutest) little guy ever by making friends and helping others. We are so blessed to have him as our son! We are also blessed to have another child (without Shwachman-Diamond Syndrome), Wade’s little sister, Calli!
HOW “WADE’S WORLD” GOT STARTED
We should first explain that shortly after Wade’s diagnosis, we (Wade’s parents) each swabbed our cheek in 2011 to join the bone marrow registry as a way to “pay it forward”. Be the Match is an organization that registers people to the bone marrow donor registry and coordinates a donor/recipient match to patients in need of a bone marrow or stem cell transplant. We know that if Wade were to develop AML and need a bone marrow transplant, we will have to search the registry to find Wade’s life-saving donor. About 6 months after we swabbed, Adam received a call telling us that he was a match for someone. And in April of 2012, after undergoing peripheral blood stem cell (PBSC) donation, Adam saved a 61 year old man’s life with his healthy stem cells!
In 2013, a Be the Match Walk+Run came to St. Louis and our family was asked speak at their opening ceremony for the event. We were honored and we not only shared our story on stage, but we gathered a team of friends, family, and coworkers to run/walk–and Wade’s World began! This is now our 3rd year of having a Wade’s World team for the Walk+Run.
DETAILS OF THE 2015 EVENT
The Walk+Run is on Saturday, October 3 at 10 am at Creve Coeur Lake Memorial Park. They offer a 4-mile walk/run, 1/2 mile walk, and Tot Trot for kids ages 5 and younger. We (Adam and Jenni) plan on running the 4-mile race because if Wade can live his life with medical challenges, we can challenge ourselves and run one mile for every year Wade has lived with Shwachman Diamond Syndrome. For the Details/Schedule of the Walk+Run, click here. If you want to join our team and participate in the Walk+Run, click the image below and type in “Wade’s World” for the team name.
DONATE TO SDSF
If you’re unable to participate in the race, you can still help Wade (and other patients) by donating to the Shwachman Diamond Syndrome Foundation. The Shwachman-Diamond Syndrome Foundation is a patient advocacy organization whose goals are to advocate and fund research towards improved treatment and a cure. The research needed to FIND A CURE unfortunately costs money. We know this economy continues to be a struggle for everyone, but your tax-exempt donation helps Wade, and patients like him, afflicted with Shwachman-Diamond Syndrome. All donations big and small help fund this research to find a cure. If you want to help us raise funds for the Shwachman Diamond Syndrome Foundation, please click the button below.
WADE’S WORLD T-SHIRT
We’re selling Wade’s World shirts again this year. The proceeds of the shirts also benefit the Shwachman Diamond Syndrome Foundation and they are $10 each. They come in infant, youth and adult sizes and can be worn all year long to help spread awareness about SDS and to show your support for Wade and other SDS patients. They can be shipped for an additional $5 and we accept PayPal. Please email us the size of shirt(s) you would like to order by September 9!
We have a passion for raising awareness and funds for the bone marrow registry (Be the Match) and Wade’s illness (Shwachman-Diamond Syndrome) and we appreciate your support and prayers for Wade and our family!
Adam, Jenni, Wade and Calli