Sweet Wes is very dear to me. He has Williams Syndrome like my son, and is in desperate need of a transplant. I applied to be a donor myself, but was unable to be considered because I’m diabetic. There were many, many bitter tears that night. However, they just found a match (YAY!) but need to raise some funds very quickly in order to help him. Any little bit helps. Also, would you mind sharing the link? Thank you so much!
You can read about Wes (his given name is Wade) and donate here.
Wade Edward Sparrowhawk Smith, known by family and friends as Wes, is a wonderful, happy little eight year old boy. Wes was born in April 2007 with the genetic disorder Williams Syndrome and without his right hand. At the age of three months, Wes had open heart surgery to enlarge his pulmonary arteries and repair a valve in his heart. Over the years Wes has struggled with various developmental delays and did not walk until just before his fourth birthday. Despite all of his challenges he has remained a shining light of joy to everyone who knows him. His upbeat personality, ready smile and infectious laugh have captivated all who know him.
In November of 2011, after a weekend visiting friends and horseback riding during Thanksgiving break, Wes was struck down by sudden onset kidney disease—Focal Segmented Glomerular Nephritis (FSGS), collapsing form. After seven months of treatments and despite repeated hospitalizations as well as outpatient treatments, Wes’ kidneys have all but stopped functioning. Now, Wes needs a live-saving kidney transplant. Research has found that with FSGS there is a better chance of survival if a transplant can be done before needing to start dialysis. Wes must receive a transplant we hope that match can quickly be found!
UPDATE: April 2015 – Wes was hospitalized March 30th and has gone into complete kidney failure. After two surgeries, Wes was given a temporary hemodialysis port and a peritoneal dialysis port. While waiting for the peritoneal dialysis port to heal, he was started on hemodialysis. With the exception of one weekend break to home, Wes spent three weeks in the hospital transitioning from hemodialysis to peritoneal dialysis. He is now home receiving daily peritoneal dialysis treatments. Wade, our son Wes, cannot live without dialysis and without a kidney transplant, he may never have the opportunity to live a normal life, or to even live.
Even with insurance, Wes’ transplant and care is going to be extremely expensive. He has undergone the transplant evaluation at the Children’s Hospital in Pittsburgh. Along with the travel and relocation to be near the transplant center, there are also co-pays, deductibles, doctor visits, and the costly anti-rejection medications he will have to take for the rest of his life. All of this presents a challenge we cannot meet without your help.
In order to ease the financial burden, a fundraising campaign in Wes’ honor has been established with HelpHOPELive (formerly NTAF), a nonprofit organization that has been assisting the transplant community for nearly 30 years. All donations are tax deductible, are held by HelpHOPELive in the Mid-Atlantic Liver Transplant Fund, and are administered by HelpHOPELive for transplant-related expenses only. Please consider making a contribution.Thank you for your generosity and support.
Mel Charlton-Smith (Wes’ mom)