Cruise in to help raise awareness of rare disease

By Amanda Crowe acrowe@civitasmedia.com

August 1, 2014

FAIRBORN — A Fairborn family is hoping a new crowd will cruise in to help raise awareness for their daughter’s rare disease during Saturday’s “Step Out & Cruise In to Cure Scleroderma” event.

When Henry and Kimberly Williams’ daughter, Emily Hoerner, was about 6-years-old she developed a rash on her arm that would not go away. Her doctors treated the rash with cortisone cream but after that did not work, her mother took her to a dermatologist who first suspected the rash could be scleroderma. She was sent to Cincinnati Children’s Hospital where she was officially diagnosed with the rare autoimmune disease at the age of 7.

“Emily had to get steroid infusions for three days in the hospital but she had such a bad reaction they had to stop them,” Kimberly said. “Then they put her on low dose chemo shots for two years, which seemed to stop it from getting any worse, so they put her on the pills.”

Emily’s parents took her to the Cleveland Clinic where they were told she was in remission and she was taken off the pills about a year ago. Now at 10-years-old, Emily’s scleroderma has flared up again on her legs, ankles and feet.

Scleroderma, which literally means “hard skin” is a chronic, often progressive, disease in which the immune system attacks its own body. The connective tissue disease can affect the skin, blood vessels, the immune system and sometimes even the organs may be involved. Medications and treatments can help with symptoms, but there is still no cure for scleroderma.

“To see what Emily has gone through so far at her age is heartbreaking,” said Henry. “She has difficulty with mobility and has cramps in her hands, legs and joints. Sometimes it’s embarrassing for her in school, because she can’t do all the activities like the other kids do.”

Emily, who will be entering the fifth grade this year, has only told some of her closest friends about her condition because she does not like to stand out. Her parents try to meet with her teachers at the beginning of each new school year to help them understand her limitations.

“Emily tires quickly and has little muscle strength which is probably one of the biggest things. She also has problems with balance,” said Kimberly.

“But she keeps a positive attitude. She knows what she has and makes the best of what she can do,” Henry added.

According to her parents, Emily enjoys enjoys reading, guitar lessons, bowling, swimming and eating ice cream. Another of her hobbies has been helping her dad restore a 1991 Chevy Camaro, which Emily named “Oscar” because of its ugly green color.

“When I bought it, it was in pretty bad shape. Emily has taken a great interest in overseeing me do the work on the car, and even helps when I’ve needed it,” said Henry, who plans to paint dark blue with aqua accents and the official scleroderma ribbon in honor of Emily and the Scleroderma Foundation.

The Scleroderma Foundation’s Dayton Area Support Group will host its third fund-raising event, “Step Out & Cruise In to Cure Scleroderma,” Aug. 2 at Community Park, 691 E. Dayton-Yellow Springs Road. The annual walk will be accompanied by the cruise in for the first time thanks to the Williams’ family.

“We had never heard of scleroderma before, and when we tell anyone about Emily’s condition they ask what it is,” Henry said. “We want more people to be aware and to the word out about the Scleroderma Foundation. We thought that adding a car show to the walk would get more public involvement, and bring in the car people, to raise more money to help find a cure.”

Registration for this rain or shine event begins at 9:30 a.m. Cost per walker or vehicle is $15. The walk will begin at 11 a.m. followed by the prize raffle and 50/50 drawings at 12:30 p.m. Cruise-in awards will take place at 3 p.m. The first 50 cars to register get dash plaques.

For more information about Scleroderma visit www.scleroderma.org.