Haley's Hope - Teen Battles ALS
Thursday, May 29, 2008 @09:19pm CST
Most 16-year-old girls sail into spring with dreams of prom, a driver's license and maybe a summer romance. Haley Stevens has the same dreams, but this year she's more concerned with staying alive.Ever since she was a child, Haley wanted to dance. She studied as a toddler. She blossomed as a teen, even making Central High School's dance team and Kiltie Drum & Bugle Corps. But when she had trouble getting up off the floor during a dance routine in the fall of 2007, she knew something was wrong.
"I thought she was just a teenager who was clumsy and tripping," says Haley's mother Gretchen Teague. "We started to notice she couldn't get up off the ground. Then she couldn't lift her right arm at all."
By October, Haley needed a walker to get around. She was wheelchair bound by December.
Haley has ALS, also known as Lou Gehrig's disease. This muscle-wasting disease has robbed the once vibrant teen of her ability to talk, to move, to breathe on her own. Gretchen has taken family leave time from her job as a Central High School's Drama teacher to for her daughter, whose mind is as sharp as ever.
"She has a great sense of humor, and of course, she can talk. She loves to talk even though no sound comes out because of the trach, but still she talks all the time." says Gretchen.
Just weeks ago when she could talk, Haley faced her battle with courage.
"I can't dance any more like I used to. I can't travel. It's harder to get to school," Haley said in an interview with her school's media department during the winter. "Everything's a challenge."
Haley's mother and father also take care of their 2-year-old son. They've remodeled much of the house to accomodate Haley's wheelchair, shower chair, lift and hospital bed.
"We took out the bathtub, so her shower chair will fit in there. That way we can wash the bottom half of her body which will be nice." explains Gretchen.
In early May, Haley began having terrible trouble breathing. She spent about three weeks in intensive care at a Springfield hospital and now can only breathe with the help of a ventilator. She also has nearly full time nursing care and gets her nutrition via a feeding tube.
Her stay in the hospital forced her to miss the prom that she desperately wanted to attend.
"Oh, she wanted to go to prom so bad, she was very upset that she couldn't go," Gretchen says. "She felt like she had let her date down. She just felt really bad about messing his night up."
Despite the challenge of a disease with no cure, there's lots of hope in Haley's house and love that may have gone unspoken before. But, not any more.
"I tell her I love her a lot more now. Not more than I used to, but I'm much more conscious of telling her I love her." says Gretchen.
Haley's doctors and the Muscular Dystrophy Association say Haley's case is very, very rare. ALS strikes mostly males, over 50.
Dr. Scott Duff of Farrell Duncan Clinic says Haley can survive for many years, barring any complications or infection.
There is a benefit for Haley on Saturday, May 31 at Central High School. The ice cream social, desserts and silent auction will be at 7:00 p.m. in the Central High School auditorium. Tickets are $20 per family or $10 for an individual. Students can get in for $7. You can purchase tickets at Central High School or call (417) 869-3059.
To learn more about ALS, you can visit MDA's website or the ALS Association's website. Or watch YouTube here .
~Best viewed with a positive attitude~