For those of you who don't know my story, childhood cancer research is very near and dear to my heart. My 14 year old son Logan, has a condition called Shwachman Diamond Syndrome(SDS). It is a bone marrow failure, pre-leukemic condition affecting 1 in 250,000 children. It is made up of two parts, pancreatic insufficiency and neutropenia. The pancreas doesn't produce enough enzymes to breakdown the child's food to get the nutrition to keep them healthy. The children typically take enzymes to help combat this symptom. The neutropenia keeps the marrow from producing enough neutrophils or white cells to fight infection. Due to this even a cold can be fatal.
We are very blessed that Logan's bout with SDS has been atypical. One of the key barometers to measure an SDS patient's health is their Absolute Neutrophil Count or ANC. A healthy individuals ANC ranges from 1700 to 7800. Logan's at his healthiest was around 440. When he was sick it was under 100, which is considered critical. When a child with SDS starts to get sick they must be rushed to the emergency room for IV antibiotics when they have a fever of 100.5 or higher. When we lived in Cincinnati we were in the ER at least once a month.
By the grace of God, we discovered while on vacation he seemed to be healthier and do better. We had blood work done before leaving for vacation and his ANC was at 440. Seven days in Florida and his ANC was at 1800! The doctors had no explanation but said if you have the ability to relocate, we would encourage it. That was 2004. Now in 2012, seven full years later, we have yet to make that rushed trip to the ER.
We continue to be active in working with the groups researching a cure for Logan's disease through the NIH, Shwachman Diamond America and other foundations. Many families aren't as blessed to have found a way to keep their child healthy and continue fighting the nightmares we dealt with constantly.
A year ago we witnessed a friend lose their 16 year old the day before his 17th birthday. He was an All-American boy, star high school athlete in the prime of his life. But the most important thing was the lives he touched. His strength and incredible attitude gave his friends and family strength working through this tragic time. Everyone who knew Joey loved him. It isn't very often you see a 16 year old make the impact Joey did in his limited years. His family and friends have formed a foundation to help families through the struggles that accompany times like these, a very fitting association to make Joey proud.
These types of situations are why I've answered the call to be a hero! I'm having my head shaved to stand in solidarity with kids fighting cancer, but more importantly, to raise money to find cures.
Please support me with a donation to the St. Baldrick's Foundation. This volunteer-driven charity funds more in childhood cancer research grants than any organization except the U.S. government.
Your gift will give hope to infants, children, teens and young adults fighting childhood cancers. So when I ask for your support, I'm really asking you to support these kids. Thank you!
Click "Make a donation" to give online, or donate by phone or mail.
