Danon disease has been part of my family for as long as I can remember. We just didn’t have a name for it.
My grandfather had what everyone called “a heart problem.” He died in his early twenties. Years later, my mother was diagnosed with heart trouble too, and she received a heart transplant in her forties. She’s in her sixties now, nearly two decades post-transplant, living far longer than anyone expected. The road hasn’t been easy; she faced serious illness again afterward and kept going anyway. She’s the strongest person I know and I’m so glad we’ve had more time together.
We only learned this was Danon disease when my son was being evaluated as a little boy, and genetic testing finally gave this a name. Elijah is five. Danon disease is part of his life, and so is his care — the annual cardiology visits, the physical therapy, and me, a mother who’s learned to speak up in doctors’ offices and insist on what he needs, even when she’s told otherwise. Because I know my son.
For a long time, I didn’t want to be tested myself. After everything I watched my mother go through, I told myself that if it was going to take me, it would take me. But Elijah changed that. I think I’m finally ready to know.
“For a long time I thought, if it’s going to take me, it can take me. My son is the reason I’m choosing to find out .”
My work is offering peer support on a mental-health warm line so being there for people comes naturally to me. What I want now is for Danon families to find each other, the way the transplant community once did for my mom. I don’t want another family to face this disease alone and to find support and community, it starts with a diagnosis.
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