Soldotna family copes with muscular dystrophy

Posted: Tuesday, December 26, 2000

KENAI (AP) -- On Thanksgiving, Kathy Freestone glanced out her Soldotna kitchen window and remarked to her husband that the Lifeguard helicopter was landing at nearby Central Peninsula General Hospital. She told him she felt sorry for whatever family had its holiday disrupted by a medical emergency.

The next day, she was on the same helicopter racing to Anchorage as her 16-year-old son, Justin, struggled to stay alive despite the ravages of muscular dystrophy.

''Justin, as his MD gets worse, has gotten weaker and weaker,'' said Ardin Freestone, his father. ''In the space of just a few minutes he lost the ability to breathe.''

After 22 days at Providence Alaska Medical Center, Justin came home for the holidays.

''He is totally ventilator-dependent, but we've got him home,'' his father said. ''He plans to go back to school, probably mid-to-late January.''

The incident was just the most recent ordeal MD has inflicted on the family. But rather than resign themselves to the disease, the Freestones are fighting back by raising funds and awareness for the Muscular Dystrophy Association of Alaska.

''I cannot express enough how important the Freestone family is to us,'' said Nell Higginbotham, district director for the MDA of Alaska.

Justin has Duchenne muscular dystrophy, which causes the progressive loss of muscle function. It is the most common MD to afflict children, attacking boys almost exclusively. About one boy in every 3,500 is born with the genetic defect causing it.

No cure exists, and those with it usually die by young adulthood from respiratory and cardiac failure.

The Freestones first heard about MD years ago when the family lived in Utah. The son of a friend had it, and Kathy helped out on a telethon fund-raiser.

When Justin was 3, she became concerned about his muscles. Preschool teachers said he was behind in his muscle skills, his calf muscles were enlarged and he walked on his toes. The family took him to doctors, who said he would grow out of it.

But when he was 5, a pediatrician recognized the symptoms and broke the bad news to the family. Kathy was pregnant with her third child at the time.

''I knew nothing about MD,'' she recalled. ''I had to look it up in the dictionary. All I knew was Jerry Lewis and the telethon and kids in wheelchairs.''

In the years that followed, she learned plenty. She found out she was a carrier, her daughter was a carrier and her second son, Adam, also had MD. By that time, she already was carrying her fourth child, and she lived in dread until she bore a healthy girl.

''The worst thing is his brother is five years younger, and he sees everything Justin is going through,'' she said.

The family became active in the MDA, and the group chose Justin as an ''ambassador'' in its district in Utah.

In 1995, the Freestones moved to Alaska. By the time they arrived, Justin had lost the strength to walk.

The family got involved with the Alaska MDA, headquartered in Anchorage. The nonprofit organization provides free support services for families affected by MD, including a summer camp for children and monthly clinics with medical specialists.

Nationally, the MDA funds research on treatments. In November, scientists announced a breakthrough in gene therapy that may, someday, provide a way to arrest the disease's progression.

The Freestones served as an official ambassador family for the MDA. And in 1998 and 1999 Justin was the state's MDA goodwill ambassador. He represented the organization, thanked sponsors and spoke at special events, including spots on television in Anchorage during the annual telethon.

Kathy was hired by Tesoro at the end of 1996. She did not know at the time that the company was an MDA sponsor.

She manages a Tesoro service station and convenience store on the Sterling Highway. In July the store sells ''Kings for Kids'' and in December ''Kanes for Kids'' to raise funds for MDA. Over the past year, her station's charity collections ranked third in the salmon and fourth in the paper candy cane fund-raisers statewide.

Tesoro also sponsors an annual golf tournament for the MDA, Higginbotham said.

The Freestones help out in MDA events outside of Tesoro as well. In the summer, Central Emergency Services raised $13,600 for the organization with its annual Fill the Boot campaign. And in November, Kathy and others raised about $20,000 at a charity ''lock-up'' at the Peninsula Steakhouse.

Kathy has had little time to promote the candy cane fund-raiser this month. She missed a lot of work because of Justin's condition, but red-and-white canes rim the walls. People can ''buy'' the canes through the end of the month and the money goes to the MDA. Last year, the station raised nearly $1,400 that way, all of which stays in Alaska.

Justin's friends from Soldotna High School, where he is a sophomore, come in to donate and to ask about him. One wall is covered with canes bearing Justin's name, she said.

The Christmas season has not come easy for the Freestones, with Justin's new ventilator and Adam spending his first winter in a wheelchair. But they take life moment by moment.

''We're just glad it's going to be a happy Christmas, not a sad one.'' Ardin said Thursday. ''It was real close.''


(Distributed by The Associated Press)

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