Hope for GusFormer Alexandria sets up foundation to research treatment for DMD.
By: Jo Colvin, Alexandria Echo Press
The last two years have made Tonya Dreher realize that messy rooms and extra ice cream really don’t matter.
“We don’t know how much time we have left, any of us really,” she said. “It sounds so cliché but it’s true.”
In May 2008, Tonya, a 1988 graduate of Jefferson High School in Alexandria and the daughter of Roger Bakewell and Marie Bakewell, found a lump in her breast. She was diagnosed with stage three breast cancer.
“Which is really not great, considering there are four stages,” she said.
Tonya had a bilateral mastectomy, lymph node dissection and reconstruction. Then she went through 18 months of “pretty aggressive” chemotherapy.
That was just the beginning of the family’s devastating health concerns.
Less than a week after her last chemotherapy treatment in November 2009, Dreher and her husband, Steve, of Francestown, New Hampshire, got more bad news. Concerned about some gross motor skill issues plaguing their 4-year-old son, Gus, they took him to a pediatric neurologist.
“I wanted them to tell me he just had some weak muscles, but that is not what I heard,” Dreher said.
The neurologist knew right away that Gus was a victim of muscular dystrophy. With 45 different types of the disease, one more blood test had to be done to pinpoint which one he had.
“Some [types of the disease] are mild so I wasn’t too worried,” Dreher said, adding that the doctor said he would call in a couple days when he got the results. He called that night.
“I knew it was bad when he called,” she said. “I just knew it wasn’t good.”
The Drehers were told that Gus had Duchenne muscular dystrophy (DMD), a progressive muscle wasting disease (see sidebar).
The disease is fatal and there is no cure.
“It was so shocking, it almost seemed like a joke,” Dreher said. “Prior to my cancer, our lives seemed so charmed. We lived in this beautiful place with three beautiful kids (Isabel, 9, Abe, 6, and Gus, 4). Why would this happen to us?”
After researching DMD, the couple was faced with the reality that their son would probably be in a wheelchair by age 12, and that he might not make it into his 20s. They became determined not to let that happen.
The Drehers found a doctor in Boston who specializes in DMD. He put Gus on heart medication and a steroid to keep his muscles stronger. Gus also takes several supplements, including fish oil, which has been shown to help with heart and muscle functions.
“They aren’t cures, they are just prolonging the inevitable,” Dreher said.
The Drehers made a vow that they would do all they could so that someday, there is no “inevitable.” Because DMD is considered an “orphan disease,” which means it is rare and has very little funding, they started their own foundation, “Hope for Gus,” to raise money for research and to find a cure.
“For my husband and I, it would be much worse if we weren’t doing something. We are both the kind of people who have always felt it’s not OK to sit back and do nothing,” Dreher said. “The devastation of his prognosis would be worse if we were sitting around waiting for it to happen.”
Hope For Gus was up and running in February 2010. The goal of the foundation is to fund research into effective treatments and finding a cure for DMD. (For information or to donate, visit the website www.hopeforgus.com.)
“We can have a part in changing the prognosis of this disease,” Dreher insisted.
Dreher and her family will return to Alexandria, her hometown, in August for a fundraiser at the Alexandria Golf Club. All proceeds will go to the foundation (see sidebar), in search of treatment for Gus and all boys (it affects males) who are stricken with DMD.
And while they search, the Drehers are going to make sure that they take time to enjoy life and realize what’s important.
“We look at our children and say, ‘Does it really matter if he has an extra ice cream? Does it really matter if her room is messy?’ ” Dreher concluded. “We’re doing things we always said we wanted to do, but we just didn’t. It has definitely helped us prioritize as a family.”
What is Duchenne
DMD is a rare, progressive muscle wasting disorder that affects about 1 in 3,500 male births worldwide. It is usually recognized between 3 and 6 years of age.
DMD is characterized by weakness and wasting of the muscles of the pelvic area, followed by involvement of the shoulder muscles. As the disease progresses, muscle weakness and atrophy spread to the trunk, forearms, and eventually affects all voluntary muscles, including the heart and breathing muscles.
It is caused by an absence of dystrophin, a protein that helps keep muscle cells intact.
There is no cure. DMD is fatal.
Funding a cure
The Hope for Gus Foundation is holding a fundraiser on Saturday, August 7 at 7 p.m. at the Alexandria Golf Club.
The event will include a cocktail reception, food, music, a silent auction and a brief speech and video presentation by Steve and Tonya Dreher.
All proceeds will go to the Hope for Gus Foundation, which is dedicated to research and finding a cure for Duchenne muscular dystrophy.
To donate items for the silent auction or make a donation to the foundation, contact Kim Pederson at firstname.lastname@example.org.