LAURINBURG — Chaka Davis Smith was totally in the dark about Jeune Syndrome when a doctor diagnosed her two-year-old son Tristan Brown with the rare disease in 2010 — the only person in the state diagnosed with the disease that year.
Some seven years later, the Tristan Brown ABC’s of Rare Diseases Foundation will hold its annual candlelight vigil Tuesday to raise awareness about that illness and other rare diseases.
Earlier this week, Laurinburg Mayor Matthew Block signed a proclamation to recognize Rare Disease Day in the city.
As part of National Rare Disease Day, the vigil will be held at 6 p.m. at the James Lot, 333 Main Street, in Laurinburg. The public is welcome.
Even though it’s a rare condition, Smith said she found comfort in other families who were going through the same turmoil. Jeune Syndrome is estimated to occur in one out of every 100,000-130,000 live births among all ethnic populations.
Jeune Syndrome is a genetic disorder that affects the way a child’s cartilage and bones develop particularly the rib cage, pelvis, arms and legs. The disease also attacks the child’s kidneys which over time results in renal failure.
“To experience the challenges of a child with a rare condition is heartbreaking because you do not know how the child is feeling,” she said. “To meet families of children with rare conditions while being in the hospital, gave a sense of comfort and you can relate to situations.
Two years after being diagnosed, Tristan passed away. After the death of her son, Smith and her mother the Rev. Essie Davis, started The Tristan Brown ABC’s of Rare Diseases Foundation.
“I begin this foundation with my faith in God to help families who have children with rare conditions, who have long stays in the hospital and need shelter such as the Ronald McDonald House,” Smith said. “We provide funding to places like the Ronald McDonald House and Children Flight of Hope because I was once one of those families who needed financial assistance while being close to Tristan.”