Meet Kayla & Nora – Fighting for a Cure 
Smithtown Sunrise Rotarian Carl Superina’s granddaughters, Kayla (7) and Nora (5), live in Lake Grove, NY with their mom Lisa, dad Graig, big sisters Maria and Emma, and baby brother Danny. Both girls were born with Shwachman-Diamond Syndrome (SDS) — a rare inherited bone marrow failure disorder that affects multiple organs, causes dangerously low white blood cell counts, and brings a significantly increased risk of leukemia, MDS, and bone marrow failure.
Because SDS is so rare, it doesn’t receive the same funding or attention as more common illnesses — but its impact is devastating. Kayla and Nora endure frequent hospital visits, painful procedures like bone marrow biopsies, and constant vigilance to avoid infections and sepsis due to neutropenia.
Now, there’s hope. A gene therapy project at Boston Children’s Hospital, through the SDS Registry, is working toward a breakthrough treatment that could provide a real chance at a cure — not just for Kayla and Nora, but for everyone living with SDS.
These two little fighters deserve more birthdays, fewer blood draws, and the freedom to simply be kids. Let’s help make that future possible.
Donate: zeffy.com/donation-form/kayla-
Learn More: Boston Children’s Hospital – SDS Fundraiser (https://secure.
Smithtown Sunrise Rotarian Carl Superina’s granddaughters, Kayla (7) and Nora (5), live in Lake Grove, NY with their mom Lisa, dad Graig, big sisters Maria and Emma, and baby brother Danny. Both girls were born with Shwachman-Diamond Syndrome (SDS) — a rare inherited bone marrow failure disorder that affects multiple organs, causes dangerously low white blood cell counts, and brings a significantly increased risk of leukemia, MDS, and bone marrow failure.
Because SDS is so rare, it doesn’t receive the same funding or attention as more common illnesses — but its impact is devastating. Kayla and Nora endure frequent hospital visits, painful procedures like bone marrow biopsies, and constant vigilance to avoid infections and sepsis due to neutropenia.
Now, there’s hope. A gene therapy project at Boston Children’s Hospital, through the SDS Registry, is working toward a breakthrough treatment that could provide a real chance at a cure — not just for Kayla and Nora, but for everyone living with SDS.
These two little fighters deserve more birthdays, fewer blood draws, and the freedom to simply be kids. Let’s help make that future possible.
Donate: zeffy.com/donation-form/kayla- Learn More: Boston Children’s Hospital – SDS Fundraiser (https://secure.