When Austin Justin stood for the first time, his mother cried. When he took his first tentative steps, she bawled.
Tabitha Fich’s phone is full of photos and videos of Austin as he’s progressed from sitting to standing to stepping. But unlike most children hitting those milestones, Austin isn’t an infant or toddler. He’s 5 years old.
He was also never expected to walk.
“He’s definitely surprised everybody,” Fich said.
Austin isn’t walking on his own — at least not yet. He relies on braces for his legs and crutches or a walker for stability. But, eventually, the goal is for the sports-loving Brush Prairie boy to be able to walk without assistance, to run the bases of a baseball infield, to lace up ice skates and play hockey.
“If he puts his mind to it, he can do it,” Fich said.
When Austin was born, his legs were twisted and his feet were clubbed. Surgery when he was 6 months old corrected the clubbed feet, and specialty braces, called ankle foot orthosis, helped keep his feet in the correct position.
Still, Austin was unlikely to ever walk.
Before Austin was born, Fich learned he had the same genetic condition she and her mother have: unknown muscle myopathy. There are many types of congenital myopathies (those present at birth) but they all share common features, including lack of muscle tone and weakness, according to the Mayo Clinic.
For Austin, it means having virtually no calf or hip muscles. In addition, the tendons in his legs were pulled tight, leaving his legs bent in a 70-degree angle.
Fich was born with more muscle than Austin and has always been able to walk. But up until a surgery when she was 15, Fich walked with a hunched back and needed a walker for assistance or a wheelchair for longer distances. The surgery, however, allowed Fich to walk unaided with a straight back and gave her more independence, she said.
For years, Austin got around the house by scooting on his bottom or “bear crawling,” where he uses clenched fists and his tip-toes to walk.
When they went outside, Austin used a wheelchair.
But the 5-year-old desperately wanted to stand upright and walk.
Fich went to bat for her son, pleading with his specialists at Shriners Hospitals for Children in Portland to perform a surgery to straighten his legs. Doctors were hesitant. They didn’t know if the surgery would be effective, Fich said.
“I felt we needed to give him the ability to try,” she said.
Finally, the doctors agreed. But, they cautioned, there was no guarantee
Austin would be able to walk.
On Oct. 10, surgeons stretched the tendons in Austin’s legs, reducing the 70 degree bend to just 10 degrees. He received new braces, these ones stretching from above his knee to his foot.
“Within a month, he was walking,” Fich said. “Nov. 27 was the first day he ever took steps in his life.”
With newly straightened legs and braces to support his diminished hip muscles, Austin was able to pull himself upright and, with a walker for stability, take those first unsteady steps.
A few months ago, Austin received a new brace — one most often used by kids with spina bifida — that better supports his hips and lower back and keeps his body upright, making it easier for him to walk. With weekly physical therapy, Austin has gone from using a walker to using crutches to get around.
“He’s come so far,” Fich said.
But the progress hasn’t come easy.
Before a recent physical therapy appointment, Austin sat tentatively on a small set of stairs. He chewed on his fingers, his head down. His wooden crutches leaned on the step next to him.
Fich bent down next to her son and asked him to scoot to the edge of the step, stand up and lock his brace into place. She reminded him that he promised to have a good session. After protesting for a few minutes, Austin reluctantly stood up as his physical therapist talked him through the steps.
“I want my mom to help me,” Austin told his therapist. “I don’t want you to help me.”
Fich reminded Austin of his promise. If he can’t follow the therapist’s directions, Fich said, she’ll leave the room. Austin grumbled about wanting his mom but continued to do as his therapist asked. He used his crutches to walk across the room. He sat down on the floor and practiced getting up to his feet again.
The feats Austin has accomplished with the crutches, his therapist said, often take kids years to accomplish. Austin has done them after only a few of days of therapy.
But, after about 10 minutes of work, Austin grew weary of his therapist’s praise.
“I’m not awesome,” Austin snapped. “I don’t want to hear that.”
When it was Austin’s turn to choose the next activity, he headed straight for the parallel bars. He hung up his crutches and grabbed the bars. Walking was easier, and Austin’s mood changed instantly.
He joked with his mom, pretending to trap her in the bars. He smiled when he lifted his body onto, and then off of, a step. But after a few minutes, Austin said he was done with the bars. His hips hurt, he said. He was ready to leave.
“I just want to go to school,” Austin said.
When Fich told him he still had 30 minutes of therapy, Austin protested. When the arguing continued, Fich walked out of the room. Austin dissolved into tears.
For 15 minutes, the duo was in a standoff. Austin pleaded for his mom to come in from the hallway and take him home. Fich refused to give in.
Eventually, Austin conceded.
“I hate these braces,” Austin said when he finally reached Fich. “I want to get rid of these braces.”
“I know you do,” Fich told him.
Love of hockey
One thing that can always bring a smile to Austin’s face is hockey. He shares his love for the sport with his mom.
When Fich was a child, she, her parents and her siblings were regulars at Portland Winterhawks family nights. As she got older, the outings became less frequent. But, for Austin’s third birthday, the family decided to revive the tradition.
“He’s loved it ever since,” Fich said of Austin.
Whenever the Winterhawks play, Austin puts on his jersey, pulls on his gloves, grabs his stick and cheers from the couch. He shouts encouragement and groans at bad plays.
And recently, Austin started playing hockey on the ice, too.
About a year ago, Fich’s dad and brother went to an open skate at Mountain View Ice Arena in Vancouver and saw a flier for a sled hockey group. In sled hockey, players sit in specially designed sleds that are on top of two hockey skate blades. The players have two sticks with metal picks on the butt end for players to use to propel themselves across the ice.
They signed Austin up, and he joined a handful of teenagers and adults who meet regularly to play. The older players took Austin in right away, giving him turns as goalie and letting him do face-offs. Austin trash-talks his teammates and high-fives them after good plays.
“He feels like he’s just like everybody else,” Fich said.
“He’s just so happy,” she added.
But Austin isn’t content with sled hockey. He wants to play with hockey skates.
Several months ago, Fich’s dad bought Austin a pair of skates. From time to time, Austin will pull on the size 10 youth skates, and pretend he’s playing ice hockey. Usually, though, he resorts to playing hockey in the living room, crawling across the carpet with a stick in hand.
With the progress Austin has made since his surgery six months ago, though, Fich is confident Austin will be able to wear those skates on the ice someday soon.
“If there’s a will, there’s a way for that kid,” Fich said. “There’s no stopping him.”
Marissa Harshman: 360-735-4546; firstname.lastname@example.org; twitter.com/MarissaHarshman