Makayla Strebler has a lot of energy — really, a lot of energy. And she’s going to need every ounce of it come Nov. 10.
The 5-year-old intends to run 5 kilometers to raise $5,000 to help her 8-year-old cousin Rylie Rahall, who has an incurable genetic disorder.
More accurately, Makayla will be racing the clock to raise money that will support research aimed at finding a cure for ataxia-telangiectasia.
“We’re running for those who can’t,” Makayla explained, as if it should be obvious. “For Rylie because she has her disease and I’m trying to help her raise money so the doctor can find a cure for her disease.
“It makes me feel happy to help people,” she said.
Makayla will be running in the Spider-Man 5K, one of several events being held as part of the Super Heroes Half Marathon Weekend at Disneyland Resorts.
She will be the youngest member of the 14-member Rylie’s Angels team, and it will be her first attempt at running 5 kilometers.
A kindergartner at Ballard School, Makayla is the daughter of Lisa and Jeff Strebler, of Solvang. She will run with Rylie, as well as Jeff and “Grandma” Perrotta, in the Spider-Man 5K that Friday. Then Jeff and Lisa both will run in the Thor 10K the following morning.
“Our family has been participating in the races for Rylie since 2012,” Lisa said. “This is the first year Makayla can run on team Rylie's Angels because the minimum age for the 5K is 5 years old.”
The daughter of Lisa’s sister and brother-in-law, Erica and Tim Rahall of Laguna Beach, Rylie was diagnosed with the rare progressive degenerative genetic disease ataxia-telangiectasia, usually referred to by the less tongue-twisting term A-T, when she was 2½.
“Imagine a disease that combines the worst symptoms of muscular dystrophy, cerebral palsy, cystic fibrosis, immune deficiencies and cancer,” Lisa said in describing A-T.
Caused when a baby inherits the recessive A-T gene from each parent, the disease manifests itself about the time a child begins to walk.
Earliest symptoms are weaving and wobbling when a toddler walks, stands or sits, accompanied by a fine spiderweb of red veins in the corners of the eyes and on the tops of the ears and nose where they’re exposed to the sun.
It then progresses into weakness, slurred speech and difficulty swallowing and controlling eye and other muscle movements.
“Most children (with A-T) are in a wheelchair by age 10,” Lisa said. “They have a weakened immune system, so infections like colds that you or I would get over in a few days can be life-threatening to them.
“There’s no cure,” she added. “So most don’t live to see their 20s.”
Rylie was 3 when Makayla was born, and despite the distance between Solvang and Laguna Beach, the girls are as close as sisters. They spend as much time together as possible — holidays, birthdays, vacations and summers.
“I play with her so much,” Makayla said. “I love her.”
She said their favorite things to do together are swimming and drawing pictures.
“We like to play dress up,” she said. “And I play with her in the front yard and inside and in the car.”
Lisa said Rylie gets tired easily — “They’re going to stop and take breaks in the race” — but mentally and socially is just like other kids.
“She’s just the sweetest, most kindhearted child,” Lisa said. “Every child wants to be her friend. She just has a spirit about her. … People just instantly fall in love with her.
“She still tries to keep up and do what other kids do,” she added. “She just doesn’t give up.”
Being just 5, it’s hard for Makayla to understand why Rylie doesn’t have as much energy and can’t do as much as she does, but Lisa said she and Jeff hope running in the 5K will help with that.
“It’s important for us to tell her about Rylie’s disease but also to understand the most important thing in life is to help others and have love and compassion for them,” Lisa said. “We always teach our kids to do for others, but I think if she gets in an activity to do something for someone else, she’ll better understand.”
Makayla appears to be ready for the race already. She has a new cape with a big heart and an “R” for Rylie on it and an A-T Cure T-shirt.
She also has new running shoes with bright lights along the sides “to help her be super fast — and so we can see her, because the race starts at 5:30 a.m.,” Lisa said.
Makayla’s been going to the park regularly to run, too, because “she knows it’s 3 miles,” Lisa said of the race.
“She has high energy,” Lisa admitted. “She loves races. She’s done the small runDisney Kids Races since she was 2. She’s done the Solvang Thanksgiving run with Rylie. She plays soccer in the AYSO under-6 Team Cotton Candy. She’s on the Santa Barbara Gymnastics Club’s Level 2 competition team and she dances at Los Olivos Dance Gallery. She was born with the energy to compete.”
So will she win the race?
“Of course I will,” Makayla said. “Because I’m too fast.”
Win or not, Lisa said the important thing is to raise funds for A-T research.
“There are only 500 cases in the United States,” she said. “That’s why they don’t get government funding for this disease. The only money they get for research comes from donations and fundraisers like this.”