Brittany Thomas

Help Elias Get Life-Saving Care for His Heart

Hi, my name is Brittany, and I’m reaching out on behalf of our 8-year-old son, Elias—our bright, brave, and beautiful boy who is fighting a rare and devastating disease called Friedreich’s Ataxia (FA).

We received Elias’s diagnosis in December 2024, and in just six short months, his condition has progressed far more rapidly than we ever imagined. FA is a rare, degenerative neuromuscular disorder that affects the nervous system and the heart. There is no cure—only management—and right now, Elias urgently needs specialized care that we can’t access here in Tucson, Arizona.

His Mobility Is Declining Fast

Elias started with basic leg braces, but his condition has worsened so quickly that he now needs full-leg orthotics that go from his knees to his feet just to help him walk. Watching our energetic little boy struggle to move is heartbreaking.

❤️ His Heart Is in Danger

Even more alarming are the chronic chest pains Elias experiences every night. One terrifying night, we rushed him to the ER where his troponin levels were in the 400s—a number typically associated with heart attacks. Yet, no damage showed on the EKG or ultrasound. His cardiologist, though compassionate, admitted that he doesn’t have the experience to treat heart complications in FA patients.

He strongly recommended that we take Elias to the Children’s Hospital of Philadelphia (CHOP), where there is a specialist who works specifically with children like Elias—kids with Friedreich’s Ataxia and serious cardiac issues. He even suggested we may need to relocate there for long-term care.

✈️ We Need Help to Get There

We are not in a position to move, let alone afford a trip across the country. But we must get Elias to Philadelphia for a comprehensive evaluation and treatment plan. Our goal is to raise enough to:

Fly Elias to Philadelphia

Cover a week of lodging and meals

Pay for transportation and medical-related expenses while we see neurologists, cardiologists and mobility specialists. 

We really cannot estimate how much he will need as what ever the insurance doesn't cover we pay out of pocket. Your help can help to make the first of many trips possible. Unfortunately, our insurance does not cover travel for rare diseases like FA, and we’ve exhausted our savings trying to keep up with medical bills.

We’re Asking for Your Help

Elias is the light of our lives. He’s funny, kind, and so full of love. We are doing everything we can to fight for his future, but we can’t do it alone. If you can donate—even a few dollars—or share this campaign with your network, it would mean the world to us.

We are eternally grateful for your support, your prayers, and your kindness. Thank you for helping us give Elias the chance he deserves.

With love and hope,