Vigil sheds light on rare disease

By Mary Katherine Murphy

4 months 22 days 11 hours ago |2374 Views | | | Email | Print

LAURINBURG — Chaka Davis’ son Tristan Brown’s short life opened her eyes and heart enough so that after his death, she used her pain to help others.

About 25 people gathered outside the A.B. Gibson center on Friday evening to commemorate Rare Disease Day along with Davis, who founded the Tristan Brown ABCs of Rare Diseases Foundation in honor of her son.

“When Tristan passed away, that was something tragic because he was my only son,” Davis said.

Tristan was 4 when he died due to the complications of Jeune Syndrome, a disease affecting fewer than one in every 100,000 children. During his life, he was the only child in North Carolina to have that particular disorder.

But in creating the foundation, Davis “turned pain into a purpose,” assisting families throughout North Carolina and as far away as Michigan whose children suffer from rare diseases.

“Learning about my son having a rare condition, I’ve learned that he wasn’t alone,” she said. “Being in those hospitals I met other children with rare conditions, from rare forms of cancer to diseases I’d never heard of.”

Some 30 million Americans suffer from one of 6,000 rare diseases identified, 80 percent of which are genetic in origin. In the United States, a disease is defined as rare when it affects fewer than 200,000 Americans at any given time.

Davis’ foundation partners with the Global Genes Project and she is an ambassador for National Organization of Rare Disorders. All three organizations promote awareness of and advocate for individuals with rare diseases in the hope that with awareness, medical practitioners will be better able to diagnose and treat rare diseases.

“I think we all know that we are our brothers’ keeper and we’re here to look out for one another and to care for one another and you have shown that in a very, very big way today,” State Sen. Gene McLaurin told Davis on Friday. “You are using your loss to help others, and that says a lot about you.”

Mary Katherine Murphy can be reached at 910-276-2311, ext. 17. Follow her on Twitter @emkaylbg.


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