Fighting for Her Heart, Twice: AnnaSophia's Story
- TFAdmin
- Apr 8
- 3 min read
AnnaSophia Berry has spent her entire life navigating the fragile balance between survival and the cost of survival. A transplant is not a cure. It is a second chance and a lifelong commitment to managing everything that comes with it.
AnnaSophia was born with complex congenital heart disease. As an infant, she received her first heart transplant, an extraordinary gift that gave her a chance at childhood, at growing up, at a future. For years, that gift held.
But transplant patients live on a knife's edge. The same medications that protect a new organ from rejection also suppress the immune system that keeps the rest of the body safe. It is a trade-off that transplant families learn to live with, quietly and constantly, every single day.
As a teenager, AnnaSophia began to experience chronic rejection and transplant coronary artery disease. In June 2025, after 48 days on the transplant waiting list, she received a second heart transplant.
She survived the surgery. She began to recover. And then the complications began.
Within weeks of her second transplant, AnnaSophia's body showed signs of rejection. Her medical team responded with aggressive immunosuppression, medications designed to protect the new heart by quieting the immune system that might attack it.
But that protection came at a cost.
Shortly after her transplant, AnnaSophia was diagnosed with Post-Transplant Lymphoproliferative Disorder (PTLD), a life-threatening form of lymphoma that can develop in transplant patients when immune suppression allows the Epstein-Barr virus to go unchecked. Her EBV levels spiked to dangerous levels.
Her care team was suddenly navigating an impossible conflict: increase immunosuppression to protect the heart from rejection, or decrease it to give the immune system a chance to fight the cancer.
Treating one condition could worsen the other. This is the reality that transplant patients with PTLD face, and it is why access to a therapy designed specifically for this disease matters so profoundly.
In the months that followed, AnnaSophia has endured multiple hospitalizations, high-dose steroid treatments for rejection episodes, ongoing monitoring for PTLD progression and EBV levels, and severe physical side effects including pain, fatigue, and neurological symptoms.
There have been moments of hope. Scans showing no active lymphoma. Early detection of rejection. Small steps forward in recovery. But AnnaSophia is not out of the woods. Her medical team continues to closely monitor her EBV levels and PTLD risk, knowing that recurrence is possible and that timely, effective treatment will be critical if her disease progresses.
AnnaSophia's story is not unique in the transplant community. It is, in many ways, the story that families with PTLD are living quietly across the country, watching, waiting, and hoping that if their child's disease returns or progresses, there will be something to offer them.
Right now, for patients with relapsed or refractory EBV+ PTLD, there is no FDA-approved treatment in the United States. A proven therapy, tabelecleucel (EBVALLO), has been available to patients in Europe and the United Kingdom for years. It has not yet been approved here.
Families like AnnaSophia's cannot wait for the regulatory process to move at its own pace. They are living this disease in real time. AnnaSophia has permitted us to share her story because she believes no family should face PTLD without options.
Please help us. Sign our open letter calling on the FDA to provide a clear and expedited path to access for tabelecleucel in the United States. It takes only a moment, and it means everything to families who are out of time. https://www.change.org/EBVPTLDCantWait
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