“Just enjoy him while he’s here”: An Ohio family proves unstoppable in the fight to save their son from a rare genetic disease

The story of Landon

We found our infant son, Landon, barely breathing in the middle of the night. Rushing to the ER, clinging to every breath, I had a gut-wrenching fear that we were going to lose him. Landon had suffered a severe unexplained seizure. That marked the beginning of our journey to save our son.

A mutation in Landon’s TBCD gene causes a debilitating degenerative ultra-rare genetic disorder affecting the brain and muscles, with symptoms similar to progressive muscular dystrophy. Many children affected never celebrate their fifth birthday.
Landon, now 6 years old, is defying the odds.

“Just enjoy him while he’s here” was the advice we received from a genetics physician. We left that office with a bleak and fatal diagnosis, no treatment options, and no inkling of hope for the future. But anyone who has met Landon knows that hopelessness can’t last. Whether in his determination to hold a fork, or in enduring years of demanding physical therapy, he reminds us every day to be unstoppable. With a big smile and incredible perseverance, he’s a magnet for joy and a reminder that we can be unstoppable, too.

Driven by Landon’s bravery, we founded the LandOnACure! Foundation with a mission to raise awareness about life with a rare, terminal disease and hope in connecting with a medical team willing to study TBCD. In 2 years, we have identified 36 patients living with TBCD and now we’re on the brink of medical breakthroughs in gene therapy and drug repurposing; both with the potential to not only save Landon, but all children with TBCD. As Landon’s parents, we will not stop until we have charted a new, hopeful course for all children battling rare disease.

Our TBCD community is small but mighty, and we’ve connected with doctors and families all over the world. LandOnACure is now recommended by doctors as a resource at the time of TBCD diagnosis. With the urgent research we’re conducting now, Landon has become a beacon for the rare disease community, and we are inspired every day to give these children a fighting chance.

We are in a race against time to save our children and we cannot do it alone.

A race against time fighting TBCD - Landon’s Story