October 08, 2015 11:45 AM

Sydney Martin was 8 years old when she started making necklaces with the beautiful rocks she found on the beaches of Lake Michigan.

Two years later, she was diagnosed with Langerhans cell histiocytosis (LCH), a rare blood disorder.

“I didn’t understand how serious it was,” Sydney, now 18, tells PEOPLE of her diagnosis. “All of it happened in the span of two or three weeks – one day it was a CT scan, then two days later I was having the biopsy. Within a week, they put a port in my chest and then we started chemo treatment.”

“It was a lot to handle,” Sydney says. “I can’t even fathom it looking back at it now.”

LCH occurs when too many white blood cells that normally help fight infection (known as histiocytes) grow abnormally and accumulate in certain places of the body where they form lesions. LCH can cause terrible skin rashes, holes in bones and damage to organs. While any age group can be affected, the disease is most common among children ages 10 or younger.

“It was devastating to know that we were headed into something scary, maybe life-threatening,” Tracy Martin, Sydney’s mom, tells PEOPLE. “I wanted to start curing her – as a mom, knowing something was wrong was a horrible feeling.”

The cause of the disease is unknown, and according to the Histiocytosis Association of America, it is estimated that LCH affects one in 200,000 children every year in the U.S.

Sydney Martin
Sydney Martin

Sydney was lucky to respond extremely well to treatment. She made a successful recovery after six months of chemotherapy and high doses of steroids.

“I’m now 100 percent healthy and so grateful for that,” Sydney says. “But it’s not that simple for a lot of other kids, it could take years, they could be unresponsive to treatment or relapse.”

Because it is considered a rare disease, there is no government funding allocated to research – which is why Sydney said she took it upon herself to contribute to the cause.

Sydney Martin
Sydney Martin

When she was going through treatment, Sydney’s family and friends began wearing her necklaces to show their support, and in that moment, “it just clicked,” she says.

“It was just such a natural way that we decided to raise the money for LCH research,” she explains. “At first, we were selling them through my house and through school, on a very small level. Then I ended up reaching out to a few local boutiques, and they started selling them. And it just grew from there!”

Sydney’s necklace business turned into the Giving Rocks Foundation, better known as Syd Rocks, which donates 100 percent of profits made through sales and fundraisers to medical research to help find a cure for LCH.

Sydney Martin's SydRocks necklaces
Sydney Martin

The foundation has since raised $420,000 and Sydney has lent a hand to every single necklace they’ve sold.

“I teach people how to make them and we’ll have a necklace-making party,” Sydney says. “But the end is a slipknot and since that’s more a complicated knot, I end up doing them. So I’ve touched each one.”

Sydney is now a freshman in college. She is in the process of starting a Syd Rocks student organization on campus, all while tackling biology and a dance minor. As a Kids’ Advisory alum, she plans to continue her volunteer work at Lurie Children’s Hospital in Chicago when she is back in town over the summer.

“We’re so proud that she hasn’t given up her passion,” Tracy says of her daughter. “It’s not for her anymore – it’s about these other kids and the suffering they’re going through.”

Sydney Martin with Wilmette brothers Trenton and (left) and Nathanael Genke, also a LCH survivor, at the Rock the Beach for Syd Rocks event in September 2014
Josh Dreyfus

Throughout their experience with LCH, the Martin family worked closely with Dr. Kenneth McClain, the Clinical Director of the Histiocytosis Center at Texas Children’s Hospital, who has studied the disease for over 30 years.

“A lot of people start to raise money and once they get better they lost the energy,” Dr. McClain tells PEOPLE. “Sydney is not only continuing it, but she’s improving it – she’s still going strong, developing new venues.”

Sydney has also formed relationships with other families who have experienced the disease.

Tracy Brown’s son Ian was diagnosed with LCH at 15 months old with over 30 lesions in his skull. Now 10, he still goes for blood work every six months but is completely healthy. The Browns met the Martins in 2008 at a fundraising dinner.

Sydney Martin
Sydney Martin

“Sydney’s work is so important because she gives kids someone to look up to,” Brown tells PEOPLE. “She turned the disease into something positive, which is so inspirational for these kids that are being diagnosed.”

“I felt helpless going through it all, like my world was flipped upside down,” Sydney says of the reason behind her dedication. “So I just took it into my own hands and made the best of what I was going through.”

“I’m excited to bring Syd Rocks to my college campus and hope other college and university campuses get involved too,”she adds. “I’m not giving up until a cure for LCH is found.”

Know a hero? Send suggestions to heroesamongus@peoplemag.com. For more inspiring stories, read the latest issue of PEOPLE magazine

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