An Orange County family
is a story of inspiration and courage. The De Mints are up against a rare debilitating disorder called Ataxia. Three of the four children were diagnosed with the neurological disorder. It was in their teens that the boys noticed their bodies, and their athletic skills, changing.The most visible side effects are constant body tremors, loss of balance, paired with slurred words leading strangers to think the boys are drunk.
From Christine Devine:
Tim De Mint LOVES hockey. Always has. His bedroom is a museum of everything hockey. He an LA Kings superfan. Tim used to play the sport himself. Hockey sticks are parked in the corner of his bedroom. A debilitating neurological disorder however, has left him unable to play. Tim noticed something was wrong when he was in his teens. His ankles were weak. It was hard to skate on the ice. The teen athlete also couldn't catch the football. It took doctors five years to determine the growing tremors and loss of balance were tied to Ataxia.
Because it is so rare and there is so little national attention, Ataxia is considered an orphan disease. The De Mints have stepped up to bring awareness and support to others. The family was hit hard by the disorder. All three boys, Tim, JT and Peter were diagnosed with Ataxia, and a rare form of it, ocular motor apraxia. Sister, Amanda, was not. To their surprise, mom Cindy and dad Gerald learned they both carry the Ataxia gene.
Cindy now heads an Orange County support group. Tim says support makes all the difference. Depression is tied to this devastating disease. Tim is now 31. For his younger brothers, it was in their teens that they too noticed their bodies and athletic skills changing. The most visible side effects are constant body tremors, loss of balance, poor eyesight, paired with slurred words leading strangers to think the boys are drunk. They are largely reliant on wheelchairs. Ataxia affects 150,000 Americans.
There is no medicine or cure for Ataxia. UCLA Medical Center, however, is playing a major role in the search for a cure. The De Mint boys trek to Westwood twice a year for check-ups. They're also taking part in stem cell research. Doctor Susan Perlman says studies are being done on the mutated gene. She predicts some kind of gene therapy progress within the next five years.
For the De Mints, joyous times are marked in the little things that matter. Tim has a girlfriend, she's also fighting Ataxia. He and his brothers are loving nephews to sister Amanda's children. Parents Cindy and Gerald, high school sweethearts, are a compassionate and courageous voice for so many others.
The De Mints have never abandoned their love of sports. They now channel it in other ways. They are active fundraisers for Ataxia awareness and raise money through and annual "Walk and Roll." As former coaches and team leaders they're skilled at organizing and bringing people together for good. The boys have their own Facebook page, Brothers On A Quest. Yes, Tim is still as big a hockey fan as ever. While his eye sight is strained due to Ataxia, he rarely misses a Kings game on TV.
More info on Ataxia: www.ataxia.org
Orange County support group
Brothers On A Quest Facebook page link to story @ http://www.myfoxla.com/story/27430874/ataxia-drunken-disease#.VG5pswT3lBU.twitter
Hope you enjoy support from this group. It is the best thing that has happened to me since being diagnosed, x
I have some form of cerebellum ataxia.It has affected my balance,coordination,eye sight,speech.I was wondering if your family had genetic testing.And how effective it is.And what treatments you have tried.And how effective they were.Presently using walker,power chair,visual aids.Anything you can tell me would be helpful.Thanks Earlene Watson