Hollister
– Sixteen-year-old Cathryn Achilles can’t perform choreographed
dances or sing the loudest, but she’ll be onstage performing for
the San Benito Stage Company’s musical
”
Beauty and the Beast.
”
Hollister – Sixteen-year-old Cathryn Achilles can’t perform choreographed dances or sing the loudest, but she’ll be onstage performing for the San Benito Stage Company’s musical “Beauty and the Beast.”
She’ll take added pride in the performance knowing proceeds from the show will go to helping her and other children.
Cathryn has a rare, progressive, degenerative disease called Ataxia-telangiectasia. It affects muscle control, confining her to a wheelchair and making it difficult to perform some basic tasks such as writing and eating. Her voice is slow and sometimes slurred or shaky.
Cathryn was diagnosed with A-T in 2000. Her parents, Jim and Deanna Achilles, had watched her health deteriorate since she was a toddler, but doctors couldn’t properly diagnose her condition.
When she finally was diagnosed, her family saw it as a blessing to at last know her affliction, even if it meant her condition would not get better, only worse. Now Cathryn and her family serve as ambassadors of the disease, which affects about one in 40,000 children. They see it as their duty to inform people about A-T and help raise money to find a cure.
It was Jim Achilles’ idea to use “Beauty and the Beast” as a fundraiser for the A-T Children’s Project.
“We want to be able to do more than we do,” Achilles says. “There’s only so much that we can afford out of our budget. The funds raised are less important than the awareness.”
The Achilles family has been involved in productions with the San Benito Stage Company for many years. Achilles has even musically directed several shows, but he was asked to serve as director of “Beauty and the Beast.”
At first he was hesitant.
“It’s a huge time commitment,” he says, “but I said, ‘I’ll do it if you make it a fundraiser for the A-T Children’s Project.'”
The stage company’s board of directors agreed to his condition. Board Vice President Mary Casillas says it was a good opportunity for the theater company to give back.
“(The cast) has really embraced this whole idea of doing a specific show for a specific fund,” she said.
A Family Unites
When Jim Achilles agreed to direct the play, the rest of his family also joined in. Cathryn and her two siblings – 20-year-old Crystal Achilles and 13-year-old Robert Achilles – are acting in the play. Deanna Achilles helps out with Cathryn backstage and elsewhere when needed.
“When we took it on, we said we’d do it as a family,” Jim Achilles says. “Because of the care needs that Cathryn has, we do everything as a family.”
Since Cathryn’s diagnoses, her family has united, and the bunch comfortably talks over one another in sharing stories.
“There’s a brevity of life there that we want to take as much time together as possible,” Deanna Achilles says.
Much of their strength as a family is backed by faith. Jim Achilles is pastor at Grace Bible Church in Hollister, and their strong religious convictions have helped them get through the toughest times as a family.
“We’ve enjoyed life with Cathryn. There are daily struggles, but we don’t have regrets,” Jim Achilles says. “We’re actually grateful to God for the gift of being able to care for Cathryn.”
Still, Cathryn can get frustrated with her limitations. She relies heavily on others for many daily tasks. As a teenager who sometimes wants to pull away, that reliance can cause stress.
“When I was younger I was happier, I think, but I’m not angry because I accept this like an assignment from the Lord. That’s what it is,” she says.
Despite her limitations, Cathryn still enjoys many activities.
“I don’t think I have one favorite hobby because I have so many hobbies,” she says. “I like to draw on my computer because I can’t draw anymore. I like to quote from the Lord because I can’t play an instrument. I like to write stories.”
Always Young at Heart
Cathryn also recently took up horseback riding after her therapist suggested it may help strengthen some muscles. She quilts with help from a church member.
But Cathryn is quick to point out she isn’t a typical teenager. She doesn’t have a cell phone or iPod and plans to keep it that way.
“I made the decision when I was young to stay young,” she says. “Being a normal teenager seems boring to me. As long as I can remember, I’ve liked being different and unique.”
Most of all, Cathryn likes helping out others coping with A-T. Through various online communities, Cathryn has written to hundreds of people who have A-T or are just interested in the disease.
“She loves counseling people online,” Deanna Achilles says. “She has her own little ministry going on.”
She recently spoke to one girl who had just found out her best friend was diagnosed and only had a few months to live. Cathryn spoke with the girl about how she could talk to her friend, and what it was like to live with A-T.
“I think what gives me joy the most is just doing what I’m supposed to do,” Cathryn says.
