How to heal Hailey

Published 10:51 am Friday, November 11, 2011

Hailey Marie Dominguez has Opsoclonus Myoclonus Syndrome, a condition that affects only 1 in 10 million people each year, and her family is looking for answers and a cure. A benefit called “Healing for Hailey” will be held at the Austin Eagles Club at 4 p.m. Saturday. -- Photo provided

Very few people have to experience what Hailey Marie Dominguez does on a weekly basis. Among chemotherapy and infusions of commercially prepared antibodies every few days, the 3-year-old from Albert Lea has to bear the anticipation of when the symptoms of her disease will attack next.

A benefit for Hailey Marie Dominguez will be held 4 p.m. this Saturday at the Austin Eagles Club. -- Photo provided

She has Opsoclonus Myoclonus Syndrome, a condition that affects only 1 in 10 million people each year, and there is no cure. Now, common things such as colds or bladder infections can trigger Hailey’s symptoms, which include rapid eye darting and shaking legs and arms to the point where she can’t walk, said her grandmother, Trisha Reynolds of Austin. At one point, Hailey quit walking altogether, fearing she would fall if she even tried.

The lack of answers frustrates Hailey’s family because the situation is kind of a fluke, like someone who gets lung cancer but doesn’t smoke, Trisha said.

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“It’s very exhausting,” she added.

Someone has to be with Hailey at all times, especially when the symptoms hit.

Since Hailey was diagnosed with the disease (also known as dancing eyes, dancing feet syndrome) in September, she and her family have been going through a tough time. Hailey’s mother, Chelsie Reynolds, was going through a job transition when Hailey became ill. The job she lined up suddenly fell through. But even if Chelsie could have started the job, she wouldn’t have been able to spend a lot of time there, as she has been busy watching Hailey all the time.

In the past weeks, the Reynolds and some friends have been preparing for a “Healing for Hailey,” benefit, which will take place 4 p.m. this Saturday at the Austin Eagles Club. Though doctors haven’t been able to offer many answers, Trisha said, the community has been a huge help.

“It’s pretty overwhelming to see what the community can do when they pull together. … and how important family and friends are,” she said.

Many have donated items for the benefit, and others will play music for no charge. Furthermore, through the process of coordinating the benefit and meeting the community, the Reynolds met another family with a child who has dealt with the symptoms for years. That family is donating to the benefit, as well.

“As much as you don’t want someone else to have this disease, it was like, wow, this is just awesome in the fact that we contacted them,” Trisha said.

Through contact with that family, the Reynolds have learned about the OMS Clinic in Springfield, Ill., which deals directly with the disease. Trisha said a tumor in the brain or along the spine can often accompany the disease and can aggravate the symptoms; however, doctors have not found a tumor in Hailey.

Treatment can put the symptoms into remission, but there are no solid answers. Until they find something out, the Reynolds and Hailey will at least have the support of the community.

“People in the community have really stepped up to help and donate,” Trisha said.