Albert Lea Girl Fights Rare Disease
Posted at: 11/12/2011 11:18 PM
Updated at: 11/12/2011 11:22 PM
By: Andrew Lovelette
(ABC 6 NEWS) -- Three year-old Hailey Dominguez suffers from Opsoclonus Myoclonus Syndrome (OMS). A disease so rare, only about 30 Americans are diagnosed with it every year.
Saturday, her family held a benefit to get her the help she needs.
Hailey Marie Dominguez, turned three years old this summer as a healthy, energetic girl, but in August, something changed.
"She was really off balance, was having trouble walking and within a week she couldn't walk at all she quit eating, like she couldn't feed herself," said Chelsie Reynolds, Hailey's mother.
Reynolds said her daughter began shaking from her legs to her eyes, so she took her to Mayo Clinic in Rochester.
"They did a lot of tests. We were in the hospitals for two weeks and after about a week in the hospital they finally diagnosed her with OMS," said Reynolds.
OMS or Opsoclonus Myoclonus Syndrome only affects 1 in 10 million people each year.
"I think they are a still learning about it there," she said.
Hailey fights her symptoms at all times of the day, meaning Reynolds suffers as well.
"I know she's not getting the sleep that she needs and just the physical frustration of having to take care of her because when shes's bad, she's really bad and you pretty much cannot leave her 24/7," said Trisha Reynolds, Chelsie's mother.
The family is raising money to travel to see an OMS specialist in Illinois to lessen the diseases effect before a tumor can develop.
"They haven't ruled out a tumor yet. That's my main concern and then just her having to go through it everyday and she doesn't understand why. She doesn't know what's going on," said Reynolds.
Treatment helps put the symptoms into remission, but there is no cure for the disease.
Reynolds hopes more specific treatment will help Hailey as she gets older.
"They caught hers really early so we're hopeful that it's working," said Reynolds.
This isn't the only child in the area who has come down with OMS. In 2001, the Reinartz family in Austin went through the same thing with their daughter Josie.