Mooresville child’s rare disease inspires family to create nonprofit to help others

MOORESVILLE, N.C. — A Mooresville family is rallying behind their son and the community they have discovered after his diagnosis with a rare bone disease.

Cash Thomas was diagnosed with Craniofacial Fibrous Dysplasia with McCune Albright Syndrome in 2021. The 10-year-old has chosen to get the most out of life no matter what.

“I think even though something bad happens, you can always turn it into something good, for the better,” Cash said.

Cash’s mom, Juliet, said her son chooses to be happy with life.

“I know he’s said before to me, ‘Mom, I only have one life to live and I’m going to choose to be happy with my life,” she said.

Cash is facing a complex disease that varies in severity.

“As he grows, this bone grows not symmetrical to the other side so for him, complications that he faces are facial differences as well as potential blindness and deafness on the left side of his face,” Juliet Thomas said.

Surgery is an option, but Juliet and Blake Thomas say that would come with its own set of risks.

“A lot of these patients are waiting until it is medically necessary,” Blake Thomas said.

Led by Cash, the Thomas family has done something positive during their challenging path.

“I really want to help the community and other people with this disease,” Cash said.

The family started “Project Change” to raise awareness and funds for research and medical expenses for other children struggling with the disease. They also want to raise money to take children struggling with the illness on an annual trip.

“I found myself a little isolated, like on an island and I knew that there was an opportunity for these children who have Fibrous Dysplasia to get together,” Juliet said.

On Saturday, the family will be hosting a 5K at Good Soul Yoga in Mooresville to raise money for their project. You can learn more about the project by clicking here.

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