The Horton boys take immense pride in their artwork, showing them off to anyone they meet.
Ariel, 11, shrieked in excitement when a reporter recognized his pencil drawing of Abel Tesfaye, better known as the Canadian rapper The Weeknd. He signed the portrait in blue crayon, “Your 1# fan, Ariel.”
The elder brother likes sketching from memory, while Jacob, 9, culls cartoon characters from the screen in marker. For Jacob’s birthday, his family planned a trip to the Crayola Experience. He said a Jacob crayon “would be green. Like the average green.”
The brothers are bonded by blood and artistic talent. They were also both diagnosed with a neuromuscular disease called Duchenne muscular dystrophy, which weakens muscles over time.
They know they have an illness called muscular dystrophy, but they sometimes struggle to understand why they have it.
“‘Why are your calf muscles bigger than other kids?’” Ariel says one classmate asked him. “It’s like he didn’t know what that is.”
“A lot of people don’t, capara,” Liat responds with a Hebrew term of endearment. “You’re allowed to turn around and tell them, ‘I have muscular dystrophy.’”
A Duchenne muscular dystrophy diagnosis happens once in every 7,250 males. It is incurable and fatal, a detail the boys don’t know.
“How can you do that to kids?” Liat Horton, their mother, says of keeping this secret. “It will take away their innocence.”
The Hortons decided to test Ariel for autism when he was 4, and the pediatrician noticed his large calf muscles, a condition known as pseudohypertrophy. A blood test confirmed the disease, and Jacob was also tested and diagnosed when he was 1.
It was through that diagnosis that Liat learned she was a “carrier by accident,” meaning no one else in her family has this mutation in their genes. It’s linked to the X chromosome.
“It’s kinda sorta like having to rely on one kidney instead of two,” explains Eddie Horton, the boys’ father and an occupational therapist. “If you’re a woman and you have two X chromosomes, the body relies on the good X chromosome and ignores the other X chromosome. When you’re a boy and you have one Y chromosome and one X chromosome…”
“Then it gets the bad one,” Liat finishes.
They make do with the layout of their home in Boca Raton, but it needs to adapt to the boys’ changing needs like wheelchair ramps, a Hoyer lift and improvements to their bathroom and bedroom. They travel to Orlando every few months for treatment, which adds to the piling medical bills.
Jacob is regressing faster than his older brother and relies on a wheelchair to get around. It also means Liat or Eddie needs to lift him into the shower and into the car whenever they go to school. Though Ariel can still walk, he gets tired easily.
Despite knowing what the future will eventually hold, the Hortons remind Ariel and Jacob how much they are loved and how talented they are. One day, Liat hopes to introduce her boys to other kids diagnosed with Duchenne to let them know they’re not alone.
“We just try to be happy,” Liat says, “and live every day the best that we can.”
ARIEL AND JACOB’S WISH
Ariel and Jacob Horton, ages 11 and 9, were diagnosed as toddlers with a fatal muscle-weakening disease called Duchenne muscular dystrophy. The disease has progressed faster in Jacob, leading him to rely on a wheelchair more than his brother. Their parents, Liat and Eddie Horton, make do in their Boca Raton home, but upgrades are required to better meet the boys’ needs. Ariel and Jacob need hospital beds with air mattresses that will prevent bed sores and a Hoyer lift to help them out of bed. Three portable wheelchair ramps will help them when going to and from school. Broken tiles and drainage issues have to be resolved in the boys’ bathroom, and building supplies such as drywall and baseboards are needed to fix issues in their wheelchair-accessible room. Gift cards for food and other basic necessities would help relieve financial constraints for the family.
Nominated by: 211 HelpLine, 561-533-1065
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