The Impact of Ataxia

At first, ataxia is manifest with trouble speaking clearly, standing and walking steadily. The disease can result in severe disability preventing individuals from working, supporting themselves or providing their own basic daily care. Walking, talking, holding objects, writing, eye contact, even swallowing become monumental and, eventually, can become insurmountable tasks.

Mom with Ataxia Wants Cure
for Children's Sake
Six years ago, Melissa Grant was enjoying an active life with her family and career. At age 36, she and her husband were raising two school-age children and a baby daughter. Melissa was working full-time as a trial lawyer. Then she began having strange symptoms - inability to walk straight, intense fatigue, and debilitating bouts of vertigo. Doctors were puzzled by her symptoms.

Within a few months, she could not walk without a cane; the cane was soon replaced with a walker; now she uses a wheelchair. Melissa has had to stop working full-time and has lost the ability to do many things she used to enjoy.

Eventually Melissa was referred to the University of Minnesota where she was diagnosed with ataxia, which is the degeneration of the cerebellum of the brain and its connections without a known outside cause. Melissa says she was relieved to finally put a name on the thing that was causing her progressive debilitation.

Nevertheless, she says, the diagnosis was chilling. "My husband and I never dreamed that what was eating me alive could hurt our three beautiful healthy children. We wept not for ourselves but for them." Many forms of ataxia are hereditary, where either one or both parents pass it along.

When patients receive an ataxia diagnosis, many also learn that each of their children has a 50/50 chance of having it also. Due to the genetic transmission process of some forms of ataxia, the children may get sicker at a younger age and with more devastating consequences.

Melissa now serves on the board of directors of the Bob Allison Ataxia Research Center (BAARC), an affiliate of the Minnesota Medical Foundation. BAARC's mission is to heighten awareness of ataxia and raise private monies to fund medical research projects that may lead to eventual treatments and a cure. Melissa has been instrumental in raising several thousand dollars, and she has made a personal financial contribution.

Melissa's hope rests with finding a cure for ataxia. "First and foremost, because ataxia is a hereditary disease, I want to see it wiped out before my children have the chance to become disabled," she says. "I want to look into my 6-year-old daughter's frightened eyes and be able to tell her truthfully that she will not end up this way too."

Melissa says she has found that focusing on funding the research is very positive for her and she encourages others to do the same. "This particular disease offers remarkably little in the way of treatment options, leaving patients feeling very helpless," she explains. "Pitching in to find a cure is a very effective way to regain a sense of control, to feel you are doing much more than just waiting for the next set of symptoms to arise."