Help Us Get Lifesaving Care for Our 10-Month-Old with BWS

Our sweet 10-month-old son has been diagnosed with Beckwith-Wiedemann Syndrome (BWS) — a rare genetic disorder that causes rapid overgrowth, airway and feeding issues, and significantly increases the risk of childhood cancer, particularly Wilms tumor and hepatoblastoma. Children with BWS need regular cancer screenings every few weeks to catch any tumors early.

The only dedicated BWS clinic in the entire country is at Children’s Hospital of Philadelphia (CHOP) — but our state Medicaid refuses to cover any out-of-state medical care, leaving us with no option but to pay out of pocket for all treatment, monitoring, and travel expenses.

Our son’s condition requires frequent specialist visits, ultrasounds, bloodwork, and personalized care that only CHOP can provide. He has already faced feeding challenges, facial asymmetry, and other complications that make this journey incredibly difficult — and the added cancer risk makes timely care absolutely critical.

We are humbly asking for help to raise funds for:

• Specialist care at CHOP

• Cancer screening labs and imaging

• Airfare, lodging, and transportation for out-of-state visits

• Procedures and follow-ups not covered by insurance

Every donation brings us closer to securing the care our son needs to stay safe and healthy. If you’re unable to give, please consider sharing our story to help us reach others who can.

Thank you from the bottom of our hearts for your support, prayers, and compassion during this time.

With gratitude,

Ismail Mom and Dad