By ERIN ROLL
roll@montclairlocal.news
Ten-year-old Claudette Johnson is a Hillside student. She’s on the school’s swim team, enjoys gymnastics and plays the piano.
She is also coping with scleroderma.
Claudette and her family — mom Christine Loccke, dad Tom Johnson and siblings Mirabelle, Spencer and Cora — are going to be lacing up their walking shoes for “Stepping Out to Cure Scleroderma:” a walk at Overpeck Park in Ridgefield Park on Sunday, June 11.
The family — and a few friends, neighbors, classmates, and parents of classmates — are walking under the banner of the Scleroderma Squashers (the children chose the name, Loccke said). As of Monday, the team had raised enough money to put them in second place on the walk website’s team honor roll.
Loccke said on Friday that the level of support from the Montclair community has been very encouraging, with friends and neighbors offering donations and moral support.
SCLERODERMA
Scleroderma is an autoimmune condition that results in the hardening of the skin. “It’s a terrible disease, but if you catch it early enough, it’s treatable,” Loccke says.
Claudette was diagnosed with the condition last year. The family had been on vacation in the Berkshires when Loccke noticed a spot on Claudette’s left arm, which the family initially thought was Lyme disease. But a specialist determined it was scleroderma.
In children, the disease typically occurs on the outside of the body and poses risks of disability or difficulties with growth. In adults, the condition tends to occur on internal organs.
Loccke said that Claudette, and the family, were very fortunate in that Claudette’s condition was detected early on. With other patients, sometimes the condition isn’t detected until other health problems have developed.
According to the Scleroderma Foundation, about 300,000 people in the United States have scleroderma.
DOING THEIR PART
Loccke and her children, and a few of their classmates, set up a table at the Montclair Farmers’ Market on May 20 and raised $168 for the cause. “This was in the rain, mind you,” Loccke said. “They were so excited to run around and teach people about this disease.”
The family set up a fundraising page on May 3 with a goal of $1,000. They reached that goal within the first 24 hours that the site was active. As of Monday, Loccke said, the fundraising page has brought in about $3,800, and a Facebook fundraising campaign has netted another $1,400.
The money raised will go to research and outreach campaigns and materials.
For more information, visit scleroderma.org.