Help Etta Battle SCID: Support Her Journey

Support Etta’s Fight Against SCID

I am a close friend of this beautiful family with 2 young children and baby Etta!

Etta was born on September 5, and at first, everything seemed perfect. Her one-week checkup was normal, but just a day later, her mom and dad received a life-changing call—her newborn screening showed positive indicators for Severe Combined Immunodeficiency (SCID). This means Etta has virtually no immune system. Without a bone marrow transplant (BMT), her life expectancy is heartbreakingly short, just 1–2 years.

Immediately, Etta and mom had to quarantine in a bedroom in their home. They began traveling 1.5 hours to Syracuse, NY, from Fort Drum for testing, which led to a diagnosis of RAG1 SCID. To keep her safe from infection, Etta has been put on several medications. From there, we were referred to the Children’s Hospital of Philadelphia (CHOP), a six-hour drive away. The treatment plan involves chemotherapy, a bone marrow transplant, and staying local for at least 100 days afterward. Even with no complications, the process will take about six months—six months of continued isolation.

During this time, while waiting for a donor, mom and Etta can’t be around her 2 young children or her husband.

All of this has come with an overwhelming financial burden. Last-minute flights, rental cars, gas, and hotel stays add up fast. They have gone through countless bottles of disinfectant and sanitizer, masks, and other protective supplies. They are only a few months into this journey and have a long road ahead—one that will continue to require travel, medical supplies, and extra support for Etta’s isolated life, until she is blessed with a donor!

Your support can make a tremendous difference. Contributions will go toward Etta’s medical and travel expenses, vital caregiving supplies, and any resources to keep her safe and engaged during this isolated time. Every donation, no matter the size, brings us one step closer to the care she urgently needs and helps keep our family connected through this difficult journey.

Thank you for helping us give Etta the chance to grow up surrounded by love and support.