Unlike a lot of kids his age, Chance Hawkins needs help with the most basic of needs – getting out of bed, getting dressed and brushing his teeth. That’s common for those diagnosed with Duchenne muscular dystrophy. The disease is almost always fatal before the age of 30. Chance is a member of KERA’s Class of ’17. KERA checked in with him to see how he’s working on gaining some independence.
Twice a week after school, an occupational therapist from Cooks Children’s hospital stops by Chance’s Fort Worth home. Catherine McKenzie works with him and his younger brother, Louis Jr., who’s also battling Duchenne muscular dystrophy.
McKenzie pulls out some purple and green blocks from her bag and places them on the table. Then, she shows him a picture.
“So what you’re gonna have to do is you’re gonna have to reach up there to get a block to make a picture,” she says.
Chance does his best to reach for the blocks and position them to look like the puzzle McKenzie’s holding up. Some of his muscles have weakened though, and his back is curved, which causes him to lean forward and favor his right side.
“I ain’’ gonna be able to keep myself steady,” Chance tells her.
“You’re not gonna be able to keep yourself steady if this arm is up there?”
“No,” he says.
Chance has trouble reaching for the blocks and lining them up correctly. Soon though, his wheelchair will be modified to help support his back.
“It’s making me mad,” Chance says. “I swear.”
“It’s making you mad? I know,” McKenzie says. “It makes me mad when I have trouble doing stuff.”
Besides having him do puzzles, McKenzie also gives Chance a pair of scissors and has him cut thick pieces of paper. Then, she hands him what looks like a stress ball with special lumps on it and tells him to squeeze it. Both of these exercises are meant to strengthen his arms and hands. The lumps on the ball massage the muscles inside his hands. McKenzie says the exercises won’t stop the disease from progressing.
“But what it does do, is it helps them be able to remain independent for a longer period of time and more functional for a longer period of time,” she says. “So instead of having Mom dress us and bathe us, we’re able to do that sort of thing for ourselves for a longer period of time.”
Although Chance gets frustrated, McKenzie talks about how far he’s come.
“When I first came here, we could only get maybe a 45 degree angle with his shoulder and today I got it all the way up,” she says. “So that’s just in two weeks.”
McKenzie’s also noticed a change in Chance’s demeanor as he nears the end of his freshmen year at Fort Worth’s Dunbar High School. He seems more motivated and willing to do things. Chance’s mom, Clarice Boyd, says having the therapist come to the house has made a difference in the way she sees the disease, too.
I’m well aware that it is what it is, but to keep it from progressing as fast is all I want. That’s all I really want.
The new therapy schedule has also made it easier for her. Last year, she had to drive Chance and her younger son to their therapy sessions twice a week in the middle of the day. That made it difficult for her to find a job that was flexible enough. Now, she is in the process of interviewing for a job at a nail salon that she can do while the kids are at school.
Chance’s dad, Louis Boyd, says it’s tough for him having two sons with the same condition. The disease runs in the family – his wife’s three brothers died from it.
“I do have my moments…when you’re sitting outside and then you have other kids that run around, playing, being rough, it kinda touches you, it hurts.”
So he tries as much as possible to keep some sense of normalcy, like firing up the grill after school as the kids sit outside and watch.