I.Ellis Johnson Elementary School Hosts Fundraiser for Jeune Syndrome

February 22, 2013

This weekend, I.Ellis Johnson Elementary School will host a fundraising event for thousands of good causes that few people have heard about.

Chaka Davis, a kindergarten teacher at I.E. Johnson, founded the “Tristan Brown ABCs of Rare Diseases Foundation” after the death of her four-year-old son last year. Tristan was born with Jeune Syndrome, a rare condition that affected his lungs and kidneys. He was the only child in North Carolina with the disease.

Davis had never heard of Jeune Syndrome when her son was diagnosed, as its annual incidence at birth is estimated to be fewer than 1 in 100,000. Diseases are defined as rare when they affect fewer than 200,000 people, or fewer than 1 in 1,500, in the U.S. at any given time. There are approximately 7,000 known rare diseases.

Before his death in May 2012, Tristan underwent treatment, including several surgeries, at the University of North Carolina Children’s Hospital and the C.S. Mott Children’s Hospital at the University of Michigan. Community fundraisers, held by I.E. Johnson and several churches, to assist Davis with medical and travel expenses provided a bright spot during her son’s ordeal.

“I thought that was so awesome that people took the time to think about me and Tristan,” Davis said. “Tristan enriched so many lives, so I want to just go ahead and continue his legacy because he was such a courageous little boy even at the age of four.”

Shortly after Tristan’s death, Davis begin to make plans for the foundation, which will donate to organizations that assisted her as well as providing funds directly to families of children with rare diseases.

“All of this that I’m doing is something that I experienced; Tristan had to go to the doctor every month, he also had to have several surgeries, and I had to stay long periods of time out of work to stay with him,” said Davis. “We had to stay in a Ronald McDonald House both in Chapel Hill and at the University of Michigan hospital, which are wonderful facilities.”

Davis also plans to contribute to Children’s Flight of Hope, a Cary-based charity aviation service that transported Tristan to Michigan free of charge for surgery, and CaringBridge. Families will also be able to apply for assistance with travel costs and shelter near medical facilities.

“Families have to relocate, commute – I had to travel back and forth from I.E. Johnson to Chapel Hill to be with my son,” Davis said. “We want to lift the mental, emotional, and financial burden for these families.”

On Saturday, the Tristan Brown Foundation will hold a “Love Concert” fundraiser at 3 p.m. at I.E. Johnson Elementary School. The concert features Kewayne and the Thomas Brothers, the IEJ step team, the Laurel Hill First Baptist Youth Choir, and Miss Kuumba 2012-2013 Latanasia Dockery. Tickets can be purchased at the door for $5.

For information about donating to the Tristan Brown Foundation, contact Davis at 336-2646.

Read more: The Laurinburg Exchange – Rare diseases focus of fundraiser

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