When Ryan was diagnosed with Fanconi anemia (FA) at 18 months old, it was devastating. There were so many unknowns, and trying to gather information online was both frustrating and scary. When we found the Fanconi Cancer Foundation (FCF) and the FA Family Support Group, that all changed. Everyone at both the organization and the FA support group was so welcoming. We immediately felt like we had finally found people who understood what we were going through and could sympathize with us.
They call themselves the “FAmily,” and that really is what they are. Everyone in the group communicates regularly and is there to share what they know.
Not only are the Fanconi Cancer Foundation and the families involved supportive, but they also spearhead fundraising efforts that have helped launch many of the trials advancing treatment and care for people living with FA and associated cancers.
Our daughter, Ryan, was part of one such trial at Lucile Packard Children’s Hospital Stanford in the fall of 2023. At age 7, she underwent a stem cell transplant due to bone marrow failure as part of this trial, which replaced radiation or a risky chemotherapy drug with an antibody called JSP-191. People with FA are extremely sensitive to radiation, and exposure to these treatments can be very risky. This gentler approach helped make stem cell transplants safer and more successful for Ryan and these patients.
Fast forward to today, Ryan will be 10 years old this October, and she is a happy and healthy kid. Her transplant was a success, and so was the trial.
Bone marrow failure is just one aspect of FA. It is a lifelong condition with many other health challenges that can arise throughout life. FCF continues to support research and fund groundbreaking cancer therapies. This research not only helps the Fanconi community but also contributes to advances in cancer treatment worldwide.
Our family owes a great debt of gratitude to the FCF for their continuous and unwavering commitment to rare diseases that otherwise might not have a voice. The future looks very bright for our “FAmily.”
