Sam’s Hope for a Cure

Turning a Challenge Into a Charity

Jake Wilhelmsen | Photos courtesy of Sam's Hope for a Cure Jan 9, 2019

He’d rather be chasing his brother around with a tree branch or working on his movie script, but if you can get Sam Jenkins to pause for a minute, you’ll learn a lot. He can name the most powerful spells in “Harry Potter” (stupefy, expulso), the best “Star Wars” movies (“Revenge of the Sith,” “Solo”), and explain cystinosis (a rare genetic disorder affecting the kidneys).

That might be all you get out of Sam before he gets bored and goes back to playing with his dog and bunnies and ducks. Sam’s done talking about cystinosis. Living with it is enough. Sam is the namesake behind Sam’s Hope for a Cure, the nonprofit his parents started when he was 2 to raise funds for cystinosis research.

Diagnosed With Cystinosis

Nine years ago, Sam’s parents, Stephen and Ashton Jenkins of Salt Lake City, didn’t know why their baby couldn’t keep anything down, why he wasn’t growing. Neither did the doctors.

“We took him to eight different doctors before he got a diagnosis,” Ashton says. “That was pretty devastating news,” Stephen remembers. Stephen has two cousins with cystinosis and he knew it brought serious health problems. “I was actually relieved,” Ashton says. “At least we knew what it was. At least we could move forward.”

Cystinosis is a rare disease where a defect in the lysosomes — the cell’s recycling centers — leads to the formation of crystals inside cells. Because lysosomes are in every cell, cystinosis affects every tissue in the body. Most kids with cystinosis need a kidney transplant before their 10th birthday and their life expectancy is 20-30 years.

A Nonprofit and a Baby Are Born

After his diagnosis, Sam got a feeding tube and finally started putting on weight. Around age 2, doctors put him on a trial drug that didn’t upset his stomach. Two other significant things happened for the Jenkins at that time. The couple discovered they were going to have a second child, and Ashton did all the paperwork to create a nonprofit to raise funds for cystinosis research.

“I got the approval letter when we got back from the hospital with Lars,” she remembers. Sam’s Hope for a Cure was born the same day as his baby brother.

Stephen and Ashton both carry the recessive gene that causes cystinosis, so their children have a 25 percent chance of being born with the disease. They sent Lars’ test off right away. It came back positive for cystinosis.

“We were bummed,” Stephen admits, “but we felt like, well, we know how to take care of a kid with cystinosis. And now Sam will have a sibling like him and he won’t have to feel different.” Lars benefitted from starting the medicine immediately. He’s even tall for his age.

Fundraiser Stars

Sam and Lars are now the stars of the annual fundraisers for Sam’s Hope for a Cure. Stephen and Ashton have organized a garage sale, a bake sale, a silent auction, an Instagram auction and a Mindy Gledhill concert, raising more than $50,000 in six years. They solicit donations from local businesses and underwrite all the other expenses, so they can hand 100 percent of the proceeds to the Cystinosis Research Foundation.

The CRF, in turn, has raised $40 million to fund research into treatment of cystinosis symptoms, and, more recently, a potential cure that has been successful in mice and may have ramifications for other genetic diseases.

Sam finally started eating solid food when he was 4, prompted by 1-year-old Lars unhooking Sam’s feeding tube and stealing Sam’s lunch out of the backpack he used to carry everywhere. Now Sam’s favorite foods are cheeseburgers and doughnuts, which he eats in between the 40 pills he takes daily. He’s a normal kid, even though he’s had to work a lot harder to be such.

His whole family, in fact, could be mistaken for just another regular family down the block, until you learn how much they’ve gone through, how well they’ve coped, and how much they’re doing to make the world better for every other brave kid like Sam and Lars who is fighting a superhero’s battle to live a normal life.

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