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.🌅 Help Smithtown Sunrise Rotary Charitable Fund To Help Fund Life - Saving Gene Therapy for Kayla and Nora🌞
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 bone marrow failure disorder that affects multiple organs, causes dangerously low white blood cell counts, and a significantly increased risk of leukemia, MDS, and bone marrow failure.
Because SDS is so rare, it doesn’t receive the funding or attention that more common diseases do. But its impact is devastating. Kayla and Nora face frequent hospital visits, painful procedures like bone marrow biopsies, and constant fear of infection 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 offer a real chance at a cure — not just for Kayla and Nora, but for others like them.
These girls — and all people living with SDS — deserve a life without fear. A life without the constant risk of leukemia and sepsis. A life filled with more birthdays, less bloodwork, and the freedom to just be kids.
Your donation can help give them that chance.
NOTE: When Zeffy requests for an OPTIONAL donation please Select Other and change to $0. (Unless you want to donate).
The Smithtown Sunise Rotary Club is a tax exempt organization as described in Section 501(c)(3) of the Internal Revenue Code.
Join us today, transform lives and let's make our community sparkle together
Donate: zeffy.com/donation-form/kayla- Learn More: Boston Children’s Hospital – SDS Fundraiser (https://secure.