NEW ENTERPRISE, BEDFORD COUNTY, Pa. (WTAJ) — This week, a local community is going all out to help families facing difficult situations.
On Thursday, students in the Northern Bedford School District will dance all night with the full permission of their parents. This year, one of the people who’ll benefit from their dance-a-thon is a 12-year-old fellow student with a rare autoimmune disease.
Over the past ten years, the Northern Bedford Dance-a-Thon has have raised more than $260,000 for medical and other expenses related to serious illnesses and other difficult circumstances
Jessie Clark’s bedroom is full of unicorns.
“The doctor said I’m one in a million and rare like a unicorn, so that became my favorite animal,” she explains.
She’s one of only 65 kids in the country with juvenile diffused systemic scleroderma (JDSS). The autoimmune disease causes thickening of the skin and joints, and can affect even the heart, kidneys, lungs and other organs. There is no cure.
Her mother Tammy says, “Jessie may on the outside look as though she is your average 12-year-old, but she has a lot of challenges and she has a lot of pain daily.”
Jessie’s disease was diagnosed after her mother learned that she couldn’t make a fist. She now has trouble gripping things, she’s become weaker, and is very sensitive to hot and cold, her mother says, adding that scans now show signs of JDSS in Jessie’s lungs and intestines.
But Tammy says of Jessie, “She’s amazing, she’s a trooper, she’s been a real warrior through all of this, and her goal is to raise awareness.
As Jessie puts it, “I just look for the positive side.”
Jessie’s selling bracelet to raise awareness and funding for her disease, and she proudly wears this shirt her mother made her.
“It says scleroderma is a journey I never planned or asked for, but I chose to love life, hate the disease and fight,” Jessie explains.
She’s looking forward to the Northern Bedford Dance-a-Thon on Thursday and plans to talk to students about JDSS in a pre-thon assembly.
Information on Jessie’s Journey
Information on the Northern Bedford Dance-a-Thon
