Swimming for a cause, swimming for family

Kristin Jones has always been able to control the pool.


She has command of her splits, her training, her diet and just about every aspect of the sport.

In high school she seemingly manipulated each ripple of water in pools around Southeast and the state as she racked up titles and championships.

As a youth in the Gastineau Swim Club there was a love and passion for the water that made her a joy to be around.

What Kristin Jones cannot control is the reason she will swim around Key West, Fla., on June 8, in a 13-mile race called The Swim Around Key West.

Jones was born with a 25 percent chance of having Friedreich’s ataxia, a genetic disorder that has confined her older brother, Ryan, 25, and younger brother Owen, 19, to wheelchairs with severe debilitating disabilities.

“It has not been easy because Ryan, Owen and I were kids together,” Jones said. “Ryan and I ran around the neighborhood together and rode bikes together, and played with the neighborhood kids. Those memories are there and watching him deteriorate has been difficult.

“It has probably been more difficult for him to actually experience it,” she said. “I can only imagine how difficult it is for my parents.”

Ryan was diagnosed at age 7, when a blood test was developed to test for the genetic disorder. Owen was tested shortly thereafter.

Jones was tested and is not a carrier of the disease. Her younger brother Trevor, 15, does not have any symptoms. The gene can be inherited if both parents have a dormant form. Roughly one in 50,000 people in the United States have Friedreich’s ataxia.

“There is no telling how long we will have together,” Jones said. “Ryan struggles with some things and some things improve. It could be in a day, it could be in a year. There are good days and bad.”

While mental capabilities remain intact in those afflicted, their bodies can have a vast range of deteriorating symptoms, including loss of arm and leg coordination, muscle loss, energy deprivations, vision impairment, hearing loss, slurred speech, aggressive curvature of the spine, diabetes and serious heart conditions.

There is no cure for Friedreich’s ataxia. Symptoms can be treated with medicines, braces, surgery, and physical therapy.

Ryan lives at home and requires 24-hour care while Owen stays in a group home in the same neighborhood as parents Charlie and Lisa, and comes home for parts of physical therapy.

Jones said she decided to swim the Key West race when seeing it last year. As she began training she began to question what was important about any endeavor when the life of a loved one was draining away.

“I was training for this race and Ryan wasn’t doing so great,” Jones said. “I wondered why I was training. There had to be a reason I was putting so much time and energy into it.”

Jones, who had just graduated from Northern Arizona University, where she swam, came home last year to spend time with the family and help around the house.

“So I decided to fundraise for the race,” Jones said. “Our family has a lot of friends that know about us and want to help somehow. It has been amazing to see how many people have been wanting to donate.”

Jones has no control over aiding her siblings except for what she can do in the water to raise awareness and funds for the Friedreich’s Ataxia Research Alliance. She plans to swim in the 10-mile Kingdom Swim Series in Vermont, the Sitka Sound Ocean Adventure 10K Swim, and Sitka’s Pennock Island Challenge. Kristin and her mother plan another open water swim in the future.

Friend and fellow swimmer Cody Brunette, in between two-year stints on the University of Virginia swim team, will also swim at the Key West race.

Brunette took a year off to study at the University of Alaska Anchorage last year and is involved in other fund-raising projects through swimming.

Jones and Brunette will fly to Florida on June 4. Ryan will accompany them as will father Charlie, two health aides and other relatives. They will rent a large wheelchair-accessible van to make the drive from Miami to Key West.

The trip will be hard on Ryan, who has lost almost all of his sight and hearing.

“We are just hoping he can make it down to Key West,” Jones said.

While at college Kristin and Ryan would communicate through Facebook. The progression of the illness has made that format, and even direct vocal communication, difficult at best.

“But the other night he was having a good night,” Jones said. “And we were just joking around and he was cracking up… those moments still happen for him. He knows I am doing the swim and how much money we have raised. He knows there are people out there who are donating and helping support research for a cure.”

There are two ways to donate to Kristin Jones’ swim for the Friedreich’s Ataxia Research Alliance.

1) Send a check to FARA, 533 W. Uwchlan Ave., Downington, PA 19335 (indicate ‘Team Ryan & Owen Jones’ in memo area on check).

2) Donate online. Google “fara kintera” then Click “Team FARA – Home.”

• On left side of page Click ‘Sponsor a Participant’

• Search for ‘Jones’ and Click on ‘Kristin Jones’

• On right side Click ‘GIVE NOW’


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