Today and forever, Ava Watson has a lot to be thankful for.
When Ava was 7 years old, she was diagonsed with spastic cerebral palsy and Charcot-Marie-Tooth (CMT) disease, an incurable and sometimes debilitating, degenerative nerve disease that impacts about 3 million people worldwide and is, according to the Mayo Clinic, typically diagnosed in adolescence or early adulthood.
Washougal resident Sarah Howe, Ava’s mother, was relieved to find an answer to her daughter’s condition after more than a year of searching. But at the same time she felt scared.
“I’ll never forget that drive home from the children’s hospital,” Howe said. “I got stuck in traffic. I’m sitting there with all of these overwhelming feelings, and I just want to get home. I started crying in the car. I didn’t know what the prognosis was. (I was thinking), ‘What is this disease? What does this mean for Ava?'”
Howe eventually found the answers to those questions. Ava, 12, now a sixth-grade student at Jemtegaard Middle School (JMS), has received treatment for her condition, which has “plateaued,” at least for now.
Ava is a straight-A student, writer and aspiring runner.
Through her barrage of doctor’s visits, physical therapy sessions, casts and leg braces, Ava has managed to keep a positive attitude.
“When we were going through all of this, I knew the best way to help her was to keep the right mindset,” Howe said. “(I told her), ‘It’s going to be as difficult as you make it, and staying positive is going to make it easier.’ And she’s the most positive kid. Never a cloudy day.”
“I have a really supportive family,” Ava said. “(They taught me to) never give up. The only disability is a bad attitude.”
Ava’s positive outlook recently attracted the attention of the Muscular Dystrophy Association (MDA), which combats muscular dystrophy and diseases of the nervous and muscular systems by funding research, providing medical and community services, and educating health professionals and members of the general public.
Earlier this year, the MDA’s Portland office reached out to Ava and asked her to become an ambassador for the organization. Most recently, Ava promoted the MDA’s upcoming Urban Warrior Showdown on KPOJ 620-AM and FOX 12’s “Joe on the Go” show.
Ava also read her poem, “Hope,” in front of a large crowd at the MDA’s Nov. 9 Toast for Life Gala fundraising event in Portland. This spring, she will be at local stores to help promote the MDA’s annual “shamrock” fundraiser.
“Because she wanted to volunteer for these events, she stood out a little bit because she wanted to give back to the MDA since they’ve given so much to our family,” Howe said.
Seeking a diagnosis
When Ava was about 3 years old, Howe began to notice that her daughter’s fine motor skills seemed different than other children’s.
“The pediatrician (said), ‘Oh, she’s fine. She’s just a late bloomer. Don’t worry,'” Howe said. “(But) she couldn’t tie her shoes. She couldn’t button her pants. I thought there was something else going on, and it was brushed off over and over again. She started walking on her tip-toes, and she had never done that before.”
The pediatrician told Howe that was called “idiopathic toe walking” and counseled the mother to not worry too much, that Ava would “grow out of it.”
“Then we started looking more at her feet. Her muscles were really rigid, and her feet were actually starting to almost turn into an ‘S,’ where she was stuck up at all times. You couldn’t get her to straighten out,” Howe said.
Ava’s symptoms continued to progress during the next several years.
“I started walking up the stairs weird,” Ava said. “And my hips would hurt a lot.”
Finally, Howe experienced what she calls her “ah-ha” moment.
“My cousin broke a drinking glass in my kitchen, and we thought we had cleaned up all of the glass,” she said. “I (saw) droplets of blood that led back to the dining room table. I was looking everywhere, and I was like, ‘Oh my gosh, somebody is hurt, and this is a substantial amount of blood and nobody has said anything.’
“Ava was sitting (at the table), drawing, swinging her feet, and she had blood dripping out of the bottom of her foot. And I go, ‘Oh my gosh, Ava, you’re bleeding.’ She goes, ‘I am?’ She had a chunk of glass in her foot and she couldn’t even feel it. I thought, ‘I need to go talk to another pediatrician. There’s something going on here.'”
The second pediatrician believed Ava’s condition might be neuromuscular in nature and referred the Washougal family to the Shriners Hospitals for Children in Portland, where doctors work closely with the MDA.
“I’d say for a good year and a half (Shriners) just said that Ava was a mystery. They couldn’t figure out what was wrong with her, why she was having issues with her hands and her feet,” Howe said. “They did an MRI (magnetic resonance imaging) and found out that she has spastic cerebral palsy, but the symptoms she was having weren’t from the palsy, so we had to go through test after test after test, and one of the tests was incredibly painful. Due to the outcome of that test, we were finally able to get approval to move forward with genetic testing, which came back for CMT.”
After receiving the CMT diagnosis, Ava wore walking casts, changed weekly, to flatten her feet. Then she went to physical therapy sessions at the Shriners hospital to combat muscle atrophy in her legs. After her legs regained strength, she received ankle foot orthosis (AFO), custom-made braces used to support muscles, immobilize joints and correct the position of her feet and ankles.
Ava’s condition has improved, but she still wears braces and has limited feeling in her feet and hands, Howe said.
“The CMT is staying at one spot,” Ava said. “It’s not getting worse or better. It’s flatlined.”
But that may not be the case in the future. Recently, Howe was approached by a doctor who told her that Ava could be a candidate for a stem-cell research program that has showed promising results in adults who have neurological disorders.
“So it might get fixed,” Ava said.
Ready to run
At the start of this school year, Ava surprised her mother by expressing an interest in joining JMS’ cross country team.
“If you had told me four years ago, when she was using a wheelchair when we were shopping at Target because her legs and feet hurt too bad, that she would go out for cross country this year, (I would’ve said), ‘No way,'” Howe said.
Howe told Ava she could turn out for the team as long as her doctor gave approval. Ava passed her physical on the condition that she stop running if she ever felt any pain.
“But I didn’t stop running,” Ava said.
Not only did she finish every race that she started, but she decreased her time in the 1.5-mile run by more than four minutes, a massive improvement for a runner at any level.
“It was cool because the first practice I could make it 150 meters, and two, three weeks later I was going all the way around the track and was able to run two laps,” Ava said.
David Lowman, JMS’ cross country coach, didn’t know about Ava’s condition until about midway through the season when he received an email from Howe.
“That’s the best thing I can say about her. I had no idea,” Lowman said. “She never told me about it. When I heard about it, I was blown away. And after I knew about it, I still didn’t see it.”
“I can’t remember her ever walking to the finish line, or saying, ‘I want to skip this run.’ Nobody ever had to wait for her to finish. Every year I give an award called ‘Fight On’ to a runner who has overcome obstacles that should keep them from being successful,” he added. “Ava winning that award this year was the easiest award decision I’ve ever made.”
Ava completed her first race of the season in 18 minutes, 45 seconds. At the Greater St. Helens League middle school championships five weeks later, she posted a time of 14:23.
“She was obviously stronger toward the end of the season,” Lowman said. “She was more focused and aggressive. You could see it on her face. She had more intensity. She didn’t just improve (her results), but she improved her effort. That was exciting to see.”
Ava improved in other ways during the season, according to Lowman.
“At the start of the season she was kind of a wallflower. She kind of blended into the scenery,” he said. “By the end of the season she was significantly different — super talkative, super outgoing, really fun, always upbeat. Her mother told me toward the end of the season that being part of a team — not a ‘special’ member, just a member — was incredibly important for Ava. She was accepted and appreciated.”
Ava is already looking forward to being a part of the JMS track and field team in the spring of 2020. She is planning to run the 400-meter race on the track and field team and to run cross country again next fall.
“I went into it with zero expectations. We were like, ‘Let’s see what happens,’ and she blew our minds,” Howe said. “Her determination out there shows her spirit. There is no ‘can’t’ in this family, and I’ve always encouraged her to give (things) a try no matter what. You never know unless you try.”
That’s the kind of mindset Howe hopes to instill in Ava and her stepchildren by periodically writing inspirational messages on a chalkboard in her kitchen.
Those are lessons that Ava has obviously learned — and taken to heart.
“The only race I lost,” Ava said, “is the one that I didn’t finish.”