Boston Children's Hospital's Patient Stories section features an SDS family's story. Read the whole story, here.
Sophia Namazy, 14, wrote a children’s book called Pigtails, Ponytails and Fairy Tales that’s currently available on Amazon about their 8-year-old sister Poppy’s bad hair days, and dedicated the story to Max, who has Shwachman-Diamond Syndrome (SDS). She is also donating the proceeds from the sales of the book to support research on Shwachman-Diamond syndrome being conducted by Dr. Akiko Shimamura, Max’s oncologist and director of the Bone Marrow Failure and Myelodysplastic Syndrome Program at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.
“If we can help other kids like Max with the money we raise, or if we can even find a cure, it’s worth it,” says Sophia
Read the whole story, here.
The book is available for purchase on Amazon, here.