On August 17th, Jen received her second double-lung transplant through a direct donation coordinated with the FBI after waiting an excruciating 3.5 years on the transplant list. This incredible gift of life marks a new chapter in Jen’s journey, but the road ahead remains long and challenging.
Jen now faces an intense recovery process, which includes regular trips to visit her medical team at NYU Langone Health in New York City. These appointments require a 3.0-hour drive each way, making relocation closer to NYC essential for her care. This move will also ensure Jen’s eligibility for NY Medicaid as secondary insurance, allowing her access to the specialized treatment she needs.
We’re thrilled that Jen is now back home in the Philadelphia area, a significant milestone in her recovery! While being home offers comfort, the frequent weekly trips to NYC for medical appointments remain physically taxing. Jen’s strength and determination continue to shine as she navigates these challenges.
Jen’s Story
At just 13 years old, Jen underwent her first double-lung transplant after battling Cystic Fibrosis (CF)—a genetic disease causing severe lung and GI issues and also affecting the liver, kidney, and pancreas. Her new lungs allowed her to live a full life for five wonderful years. However, chronic lung rejection set in three years ago, coinciding with the COVID-19 pandemic. Since then, her lung function has declined to 20%, and she has relied on oxygen 24/7, facing every day with incredible courage.
After being evaluated for a second double-lung transplant, only one transplant center in the country was willing to take on her high-risk case; Jen was listed at NYU Langone Health in March 2024. On August 17th, 2024, her renewed hope became a reality when she received an unheard-of direct donation transplant that saved her life.
How Can You Help?
Recovery from a transplant of this magnitude is both medically and financially demanding. The out-of-pocket expenses for pre-and post-transplant care are estimated at $250,000, even with insurance. Jen and her family are working with the Children’s Organ Transplant Association (COTA) to raise funds for her care.
Your support can make a difference as Jen continues her fight to reclaim her life and move to the New York City area near her NYU Langone Health team of specialists. When things happen, they happen quickly; a three-hour drive can be the difference between life and death. Whether you donate, share her story, or offer encouragement, every act of kindness counts.
Follow Jen’s Journey
Stay connected with Jen as she navigates this journey with hope and resilience:
With gratitude and hope,
Jen & Family
The Children’s Organ Transplant Association (COTA) helps children who need a life-saving transplant by providing fundraising assistance and family support. COTA also works with individuals of any age with a single-gene disorder such as Polycystic Kidney Disease, Cystic Fibrosis, or Sickle Cell Disease. COTA is the nation’s only fundraising organization dedicated to raising life-saving dollars in honor of transplant-needy families. 100% of each contribution to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free of charge, and gifts to COTA are tax-deductible to the fullest extent of the law.