Gina's Medical Journey: Your Support Matters

My name is Kathy, and I’m reaching out with a heart full of love, hope, and desperation.

I am creating this fundraiser to humbly ask for help for a dear friend of mine & her family.

Those of you who know me, will know Gina. She is one of the wish children that I have had the opportunity to work with, as a volunteer wish coordinator for the Marty Lyons Foundation- a foundation that helps children who are facing lifelong illnesses. Gina & I quickly became friends and have continued to share many special moments together.

Gina has endured a lifetime of suffering due to a rare, aggressive condition called plexiform neurofibromatosis type 1—a painful, disfiguring tumor that runs from the fifth nerve in her brain to her carotid artery, down the entire right side of her face. It claimed her right eye and now threatens what remains of her health and spirit. On top of this, she also lives with optic pathway glioma, a cancer that has left her legally blind.

From the time she was 18 months old, Gina has undergone countless rounds of chemotherapy, invasive treatments, and experimental clinical trials at top children’s hospitals. For years, her care was handled by experts at Children’s Hospital of Philadelphia and Cincinnati Children’s, but when she turned 21, Medicaid would no longer cover treatment out-of-state. She was forced to start over with new doctors in New York—none of whom truly understand her rare condition.

Gina is now 22 years old.

In July 2024, Gina was hospitalized for a severe ear infection that spread to the bone. It halted her chemotherapy and began a devastating downward spiral. Since then, she has been vomiting daily—violently and without relief. She cannot eat or drink. Seven hospitals and countless specialists later, no one has been able to diagnose the root cause. She’s had feeding tubes placed and removed. Nothing has worked. She’s now 86 pounds and has recently shared that she feels she has no quality of life.

Through it all, her family has never left her side. Her mom, Donna, is her full-time caregiver through the CDPAP program, but when she is hospitalized (which has been frequent), she can’t log hours or earn income—even though she is with her 24/7, advocating, supporting, surviving. For the past nine months, she has had no income. Donna has maxed out her credit cards just to pay for gas, utilities, car insurance, and basic living expenses. In addition, Donna is dealing with a stack of medical bills that Medicare and Medicaid are refusing to cover, due to what they consider duplicate tests and care across different hospitals. She will need to go through each one individually and request a fair hearing, just to get them reviewed.

On top of it all, Donna’s husband (Gina’s dad) passed away nearly four years ago. There is no pension.

Gina & her family desperately need our help. Every dollar will go toward basic survival—gas to get Gina to daily medical visits, groceries, heat, electricity, phone, and maintaining a car that can get them where they need to be. It will also help Donna to continue to advocate for Gina’s care and possibly appeal to Medicaid for her to return to CHOP—where doctors know how to treat her.

Gina is brave, wise beyond her years, and full of light. Her spirit is strong, but her body is failing.

Please, if you can give, I am deeply grateful. If you cannot, please consider sharing her story.

Thank you from the bottom of my heart.

With love,

Kathy