Thomas Henry Shattuck

Family and friends of Tommy Shattuck are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with transplantation and care due to Chediak Higashi Syndrome. Our goal is to help ease the financial burden we may face, while helping our boy fight his battle with CHS.

Tommy, at only 8 months old, was diagnosed with a rare genetic disease called Chediak Higashi Syndrome and was put on a donor registry “Be the Match” and we are waiting for a match for him. Once we find a match we will have to go to the Boston Children’s Hospital and Dana Farber Cancer Institute (Jimmy Fund Clinic) to undergo chemotherapy to prepare him for this stem cell transplant.

Tommy is so special and so loved by many. He has more personality than anyone I’ve ever met and he lives to make others happy, even at only 8 months old. He is popular and well known in the community for his “cool shades” that are there to help with light sensitivity due to Ocular Albinism, which is a symptom of CHS.

CHS is an extremely rare condition. Without the stem cell transplant ANY time Tommy is sick he has an extreme risk of going into the “accelerated phase” also known as hemophagocytic lymphohistiocytosis (HLH) which can be fatal. Luckily Tommy had only ever been sick once. According to studies, Children are who do not have the transplant normally don’t make it to 10 years old. The stem cell transplant if successful significantly decreases the risk of getting sick and going into that accelerated phase. It does not completely eliminate it, and this is something Tommy will battle his whole life.

So please keep up with the prayers and support. Unfortunately this is only the beginning of a very scary and long journey. We wouldn’t be able to do any of this without all the wonderful support we are receiving!

If you would like to become a transplant donor, go to BetheMatch.com to sign up! It can save Tommy’s life or a life like his!

TEAM TOMMY!❤️

Tommy has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this Tommy’s campaign, click on the Give button.

For more information, please contact Help Hope Live at 800.642.8399.

Thank you for your support!