July 24, 2013|By Brian L. Cox, Special to the Tribune
When Wilmette teenager Sydney Martin goes beachcombing, she is in a sense looking for something very specific: a cure for a rare blood disease.
Martin, 16, a junior at New Trier High School, was diagnosed with Langerhans cell histiocytosis (LCH) at the age of 10, received intense treatment and is now doing well. But she continues to fight the disease through a fundraising initiative that involves making necklaces and pendants from small rocks she and others collect on the shores of Lake Michigan.
She actually started her rock necklace business when she was 8, but after her diagnosis, she decided to give 100 percent of the money she made to medical research to help find a cure for LCH. Her campaign, “Syd Rocks for LCH Necklaces,” led to her family forming the Giving Rocks Foundation, which to date has raised $158,000. On her website, http://www.sydrocks.com, Martin lists a fundraising goal of $250,000 by the end of the year.
“We were extremely fortunate,” said Tracy Martin, Sydney’s mother. “Doing the fundraising, we met many other families diagnosed with the disease that did not have as great a response to the treatment and are still trying other types of treatments.
“We’ve even lost a few of those children to the disease, which is why we still have this burning desire to figure out how we can help with funding for research,” she said.
Tracy Martin said her daughter has sold thousands of the rock necklaces at $20 each over the years and now the foundation is hosting its first-ever “Walk the Beach for Syd Rocks” in New Buffalo, Mich., on Aug. 17. The idea is to collect 8,000 rocks in one hour. Sydney Martin could not be reached for comment because she was in the Dominican Republic on a Spanish-language learning trip.
“Everybody’s going to get a bag when they register and they’re going to collect the rocks they love,” Martin said. There will be a necklace-making table, the sale of a line of T-shirts Sydney developed, a folk singer and an artist making sand sculptures.
“It’s just going to be a very unique event on the beach,” Martin said.
LCH is sometimes referred to an “orphan” disease because there is not any government funding allocated to researching the best treatments and a cure, according to Sydney Martin’s website. It describes her treatment as having a port surgically implanted in her chest for six months of chemotherapy and high doses of steroids. While histiocytosis is not classified as cancer, it requires some of the same treatments.
One of the leading LCH research and treatments centers in the country is at Texas Children’s Hospital in Houston, where Dr. Kenneth McClain described Sydney Martin as “an amazing young person.”
“She’s very smart and committed and a very clever and wonderful person,” he said. “It’s truly amazing how she has committed herself to raising money for LCH research for years.”
Her fundraising helped pay for a LCH 3 study, which included an international clinical trial to determine if there were possible treatments other than those currently being used, McClain said.
“It takes a lot of money to do the research that we’re doing down here in Texas,” he said. “We’re making advances in understanding the biology and therefore choosing better therapies.”
Tracy Martin said that’s what her daughter’s fundraising campaign is all about.
“Our main goal is to continue sell the necklaces, raising awareness and make a difference,” she said.