Need for Speed
Makenna Sewell, Oregon's Muscular Dystrophy Association Goodwill Ambassaddor, harbors a secret
There's no holding 10-year-old Makenna Sewell back.
She's been river rafting and rock climbing, shot a BB gun and caught salamanders in the river with her friend, Kylie.
This summer, she plans to speed down a 500-foot zipline at Camp Yamhill in a full body suit to absorb any impact - but only after she gets the cast off her left wrist, which she broke in a scooter accident on Father's Day.
And, when she turns 18, the freckle-faced dynamo with a penchant for loud music and giraffe paraphernalia plans to do the near-unthinkable for someone with muscular dystrophy: Makenna wants to go skydiving with her adaptive PE coach, Susan Dieter.
'We're really connected - it's going to be so much fun,' explained the spunky brunette, sporting cornrows in her hair and blue-and-green polish on her toenails.
Her mother, Shawnda Sewell, a teacher in the Forest Grove School District, simply shakes her head.
'She loves roller coasters and tubing on the river,' said Shawnda. 'She doesn't have any fears. We've raised Makenna to be very independent and very open.'
For now, Makenna still largely determines her own pace and most of her activities. She's using her electric scooter a bit more these days because her leg muscles often cramp and fatigue. When she attends overnight parties at her friends' houses, she monitors her own bedtime - because if she gets too little sleep, she'll pay for it for the next couple of days.
Sometimes, even with the help of her service dog, Kyia, a Husky Shiba-Inu, Makenna has trouble getting up off the floor. Her disease - caused by a recessive genetic disorder that's chronic and progressive in its degenerative effects on muscle tissue - is beginning to take its toll.
'Someday I'll probably need a walker or a wheelchair to get around,' said Makenna, a look of determined acceptance on her face. 'I'm going to lose my balance for walking.'
Her calf muscles are larger than normal and her quadriceps are smaller. Makenna's back often aches because the muscles surrounding her spine are weak.
She has spinal muscular atrophy type 3, a condition in which the nerves in her back fail to send signals to the muscles in her lower extremities. When standing, Makenna must lock her knee joints to avoid toppling over.
'She can't walk up the stairs,' noted Shawnda. 'Our entire downstairs is handicapped-accessible.'
To alleviate her symptoms, Makenna spends time in the family's warm hydrotherapy pool and attends regular physical therapy sessions.
The little girl has a no-holds-barred attitude about life that's infectious to those around her.
'We tease Makenna that she picked friends who are bigger than she is because she needed them to help her up,' Shawnda joked. 'It helps to have a sense of humor.'
Understanding her own situation is key to Makenna's 'job' as the 2006-08 Oregon Muscular Dystrophy Association Goodwill Ambassador. The youngster, who'll enter fifth grade at Tom McCall Upper Elementary School next fall, was named to the spot last December.
As part of her official duties, Makenna will mentor other children with muscular dystrophy during activities at Camp Arrah Wanna in Welches July 8-15. Ninety-six youth, ages 6-21, converge on the camp to swim, make arts and crafts and attend a prom and a magic show.
Makenna can't wait for her taste of freedom to begin.
'I'm really looking forward to it,' she said last Thursday, hugging Kyia and tussling with her brother Grayson, 7, in her family's living room. 'I can't call home for a whole week.'
It's easier for Shawnda and her husband, Brendon, to let go of some of their worry these days. When Makenna was 6 and went away to camp for the first time, her mom and dad nearly went crazy.
'One of my friends called after a few days and said, 'I talked to Makenna and she's doing fine,'' Shawnda recalled. 'I was so relieved. But at the same time, I knew she'd be OK.'
Born with a strong will and a stout heart, Makenna overcame a horrible viral infection at age 2 after spiking a 105-degree fever. Once she recovered, however, her parents noticed that their toddler literally had trouble getting out of bed.
'She would fall 30 to 40 times a day,' noted Shawnda. Alarmed, doctors ran Makenna through a battery of tests that eventually confirmed her condition.
'We're very fortunate, because people with type 1 muscular dystrophy don't live through infancy, and people with type 2 don't live through childhood,' Shawnda said. 'Makenna has a normal life expectancy.'
As Goodwill Ambassador, Makenna gets to 'travel all around the state' raising awareness and funds for children with muscular dystrophy, she said.
Since it costs $600 to send one child to camp, Makenna is serious about her philanthropy. When she speaks in front of groups, 'she's not the least bit embarrassed or shy,' noted her mother.
'I really want to help those kids do something fun,' she said.
Even though Makenna has eight years to go before she's officially an adult, she already knows what she wants to be when she grows up.
'I want to become a race-car driver,' she declared with a grin. 'I'd like to race around the Banks Speedway.'
Her mom could only heave a sigh and shake her head.
'Makenna is kind of a thrill-monger,' Shawnda Sewell observed.