Supporting a Local Teen’s Fight Against Rare Blood Disease: Strong to the Marrow

The Sudden Turn

What began as an ordinary day at school ended in an emergency room visit that changed everything. After a sudden collapse led to the discovery of Meckel’s Diverticulum and an emergency bowel resection, our son required four life-saving blood transfusions. While we hoped the surgery was the end of the road, complications with infections and blood clotting led to a bone marrow biopsy and a devastating diagnosis: Myelodysplastic Syndrome (MDS).

The Rarest of Battles

MDS is exceptionally rare in children, and our son’s specific genetic mutations make his case even more unique. To date, he has endured six bone marrow biopsies, completed his third round of chemotherapy, and required a total of 12 blood transfusions and 3 platelet transfusions. We are now preparing for the only known cure: a Bone Marrow Transplant at Children’s Hospital of Philadelphia (CHOP).

The Definition of Resilience

Through the exhaustion of chemo and the pain of multiple procedures, our son’s spirit remains unbroken. He is the definition of "Strong to the Marrow." While his peers are preparing for traditional milestones, he is fighting for his life—yet he refuses to give up.

Turning Hardship Into Hope

Even in the middle of our own battle, we have felt called to help others. We believe that we are stronger together. Through holding bone marrow swab drives, we have successfully added 42 new potential donors to the registry, bringing hope to other families waiting for their life-saving match. We are committed to paying it forward by supporting other families navigating this landscape. We are also working toward creating a nonprofit, Strong to the Marrow, dedicated to providing critical support, resources, and advocacy for families navigating pediatric MDS cases.

The Road to Recovery

The transplant process requires a total relocation to Philadelphia starting July 22, 2026. Because our son will be severely neutropenic, the recovery requirements are incredibly strict:

Medical Isolation: He must live within a few miles of CHOP in private, sterile housing. Communal living or shared facilities are not an option due to the high risk of infection.

Life on Hold: A dedicated athlete who loves swimming and soccer, and an active Boy Scout, our son has had to put his passions on hold to prepare for a long isolation period that will span most of his freshman year.

How You Can Stand With Him

The financial burden of relocation, specialized housing, and the strict requirements of a neutropenic diet is immense. Your support will go directly toward:

Private Housing near CHOP: Essential for post-transplant safety.

Relocation Expenses: Costs associated with our three-four month stay in Philadelphia.

Medical & Educational Support: Medications, supplies, and tools not covered by insurance to support his recovery and schooling.

If you cannot donate, please consider sharing this page or learning more about how you can join the bone marrow registry- Thank you for being part of our village and for standing with us as we fight to stay strong to the marrow.

*Update 7/22: Scottie was doing well, waiting in the hospital for some infection results and I was headed out of the parking garage when I got a call to come back immediately because he needed to be taken for emergency surgery on his bowels that took 3 1/2 hours. He ended up with an ileostomy and now this creates a huge rift in our transplant plans. The kid can't get a break but he's determined as all hell. 5 days after surgery, he's learned how to care for the ostomy, is walking around the unit, eating regular foods and breathing well on his spirometer.

*Update 7/27: Scottie was transferred to CHOP on Friday... the journey continues!

*Update 8/2: A fungal infection has made its way in so that will need to be tackled before transplant. An unexpected extension to our time here in Philly.