In October 2017, I was diagnosed with Shwachman-Diamond Syndrome (SDS), a very rare genetically inherited autoimmune disorder. (Click the link...I'm a star in the video!) This disorder affects the bone marrow, pancreas, skeleton, brain, immune system and other organs. Patients with SDS are at higher risk of developing leukemia and bone marrow failure. Because SDS is rare, few physicians are knowledgeable about it; this can result in delayed or incorrect diagnosis and improper treatment. 90% of all funds raised will go to a fund at DFCI supporting research towards a cure for SDS.
I am very grateful to all of my doctors, nurses and support staff at Boston Childrens Hospital, Dana Farber Cancer Institute and the Jimmy Fund Clinic for making my treatment as OK as possible.
Please watch this video my daddy did at his old job: https://youtu.be/pd6Nlhsg9n8
This is my 3rd year doing the Jimmy Fund walk. They have been great. I've been able to participate in some really cool events like meeting the former AL MVP Mookie Betts and playing T-Ball with him.
Thank you very much for donating. So far we've raised just shy of $40k in 2 years.
Anna and the Nazarenko Family