LAURINBURG — A group of about two dozen Scotland County residents came together this week to celebrate Rare Disease Day.
The candlelight vigil is meant to raise awareness for the hundreds of diseases that are too atypical to have their own day or month, unlike common disease like heart disease or breast cancer.
Rare Disease Day — recognized internationally — was started in 2008 and originally was on Feb. 29, the rarest date of all, which only falls on leap years. The day is celebrated Feb. 28 in between leap years.
The local event was organized by the Tristan Brown ABC’s of Rare Disease Foundation and held on the corner of Church and Main streets to show support and pray for those who live with a rare condition or have passed.
The local foundation was founded by Chaka Davis Smith, who’s son, Tristan Brown, passed away from Jeune Syndrome, one of the world’s rarest disease, in 2012.
“I have immediate family, church family and community family who have come out to honor Tristan and Rare disease day,’ said Smith.
Tuesday’s Rare Disease Day vigil follows Brown’s birthday — he would have turned 9 years old on Monday.
Laurinburg Mayor Matthew Block signed a proclamation to recognize Rare Disease Day in the city, and also attended the vigil, along with family and friends of Smith, as well as community members.
“I’m here to show my support for people who suffer from rare diseases,” Block said. “I applaud Chaka Davis Smith and her mother, Essie Davis, for getting recognition for this event.
“I deal with probably the most common disease, the common disease of heart disease happens to so many people it has a lot of advocacy and in fact it gets the whole month of February to be recognized.”
Smith was totally in the dark about Jeune Syndrome when a doctor diagnosed her two-year-old son with the rare disease in 2010 — the only person in the state diagnosed with the disease that year.
Seven years later, the Tristan Brown ABC’s of Rare Diseases Foundation held its 5th annual candlelight vigil to raise awareness about that illness and other rare diseases.
Smith and her foundation have also looked to the community for donations to help raise money for others dealing with rare diseases to take their children to the Ronald McDonald Houses in Chapel Hill, Durham and Ann Arbor, MI.
“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.”
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.
“Over the past few years, this vigil has helped raise awareness to rare diseases — a lot of my coworkers will say they know someone with a rare disease and this event helps is raising that awareness,” Smith said.
Reach Nolan Gilmour at 910-506-3171