Renea Holden of Carnegie is on a mission — find a cure for reflex neuromuscular dystrophy, a debilitating but little-known illness that has afflicted her 17-year-old daughter, Molly, for three years.
As part of the mission, she has organized a fundraising event, Molly’s Ray of Hope, at 10 a.m. Saturday) at the Carnegie Presbyterian Church, 219 Ewing Road in Collier.
“To look at her, one would never know the agony she is in," Mrs. Holden said. "She looks perfectly normal, and yet there are some days she can’t even get out of bed.”
Among the other typical symptoms are swelling of the extremities, nausea, dizziness, poor circulation and numbness.
Those who suffer from the disorder also feel acute pain when they are touched. Complicating Molly’s situation is that she also has Dysautonomia, a nervous system malfunction that leaves her feeling dizzy and faint.
Often, RND is triggered by an injury. In Molly’s case, it was a bee sting.
Luckily for victims of both these ailments, Pittsburgh has a place where families can turn for help.
“The Children’s Institute offers an intense physical therapy program. It is one of only five in the nation. Kids are waiting from all over the country to come here in hopes of finding a way to function in spite of this debilitating disease,” says Mrs. Holden.
To support the hospital and additional research of these two illnesses, Mrs. Holden's fundraising program will feature Jonathan Pletcher, clinical director of the Adolescent Medicine Division at UPMC and an assistant professor at the University of Pittsburgh School of Medicine, who will discuss both of these ailments. Molly will speak, too.
Besides a continental breakfast, the event will offer an auction and bake sale, as well as the sale of awareness bracelets and keychains. Among the auction items will be tickets to a Penguins’ game and the Byham Theater, Civic Light Opera's production of “A Christmas Carol”, passes to the Carnegie Science Center and Children’s Museum, as well as gift certificates from the Carnegie Coffee Co. and Ciao’s.
To promote the fundraiser, Mrs. Holden within the last month asked Carnegie Council and the Collier and Scott commissioners to issue proclamations recognizing November as RND Awareness Month. All three boards did so unanimously. Next year she plans to add the city and the state to the list.
“I am determined to spread the word, gain community support and help find a cure, Mrs. Holden said.
Information: 412-276-4640 or http://webmasterrayofhope.wix.com/molly.
Carole Gilbert Brown, freelance writer:firstname.lastname@example.org