Story, Patient

Child Life Specialists Help Cooper Feel at Home

October 31, 2022

Undergoing weekly treatment for a progressive inherited disease, Cooper’s Children’s Hospital Colorado caregivers have become extended family.

Cooper, Children’s Hospital Colorado Patient Ambassador

Cooper has spent six hours a week receiving infusions at the Center for Cancer and Blood Disorders at Children’s Hospital Colorado since he was just 18 months old. For him, the weekly routine is just a normal part of his life. 

“Children’s Colorado is like a second home,” Cooper, now 10, says. “They take good care of me.”

Cooper has a rare inherited disease called Morquio syndrome, type A, a metabolic condition that largely impacts the bones, but can also affect organs and other parts of the body. Often diagnosed in early childhood, it is a progressive disease that can widely differ in symptoms, severity, and age of onset. Murquio syndrome is a part of a group of diseases called mucopolysaccharidoses (MPS), which is a group of genetic disorders that often cause short stature, stiff joints and numerous other complications.

Individuals with Morquio syndrome don’t make enough of the GALNS enzyme in their cells, which is needed to clear out cellular waste. Eventually, cells throughout the body become overloaded with cellular waste, resulting in a host of problems. For Cooper, Morquio has caused several skeletal abnormalities thus far stunting his growth and affecting his chest, spine, and legs and impairing his mobility.

Cooper was diagnosed at Children’s Colorado when he was just 16 months old, after his mom, Chris, noticed a bump on his back. Incredibly, the Food and Drug Administration approved the first and only enzyme replacement treatment for Morquio A weeks later and Cooper became the youngest patient ever to start the therapy.

He has also undergone multiple, major surgeries over the years to address problems with his bones and will likely need additional procedures as he gets older.

“The Vimizim treatments help him, but they are not a cure,” Chris says. “Unfortunately, the medication doesn’t help with any of his skeletal issues – and he has a lot of those.”

Despite the overwhelming physical challenges of Morquio A, Cooper has always been drawn to sports – especially hockey but also basketball and football – and aspires to be an NHL coach one day.

“I’m ‘sportsy’,” he says with a grin.

‘Going above and beyond’

To pass the time during his infusions, Cooper plays NHL on the Xbox or will take to the hallways to maneuver pucks with his mini hockey stick. He often pulls his Child Life Specialists into his antics, who are all too happy to oblige him.

Cooper’s least favorite part about receiving infusions is when the adhesive securing his IV is removed from his port. His Child Life Specialist team created a special routine they dubbed “sweaty time” just for Cooper.

“We developed this over the past several years, and it’s a major therapeutic piece to his treatment every week,” says Certified Child Life Specialist Whitney Shoemaker. “It’s really fun and gets us all engaged and very sweaty.”

About 15 to 30 minutes before his infusion is complete, they engage him in a sport of his choosing. Through working up a sweat and moving around, Cooper’s dressings are easier to remove, making the port detachment process much less stressful for him.

“The play factor is something we always want to bring to help kids push through,” says Certified Child Life Specialist Ashley Schirmer.

Through the years, Cooper has seen many young patients with cancer complete their treatments at the Center for Cancer and Blood disorders and commemorate the occasion by ringing the “warrior bell.” Knowing Cooper would need to receive weekly infusions throughout his lifetime, his care team resolved to give Cooper a chance to ring the bell when he hit an important five-year treatment milestone in 2019.

“We try to go above and beyond for all our patients, and it’s easy to do that when you have a kid like Cooper and a caring family like his,” Schirmer says.

On that special day, the Infusion Center was transformed into “Cooper Stadium.” Cooper and several friends who attended the event got to play an epic game on a taped down hockey rink. His infusion room even bore the sign “Cooper’s Penalty Box.” Cooper’s care team surprised him with silly string, a gift, cake, and offered him a “Zamboni” ride on the floor cleaning machine. Before the festivities ended, Cooper was invited to ring the bell.

“That was the best day ever,” Cooper recalls with a wide smile.

Adds Chris, “Whitney, Ashley and the nurses hold me tight as I struggle with the ups and downs of being a rare disease mom. They’ve wiped my tears, encouraged my struggling soul, and laughed with me every week. I love sharing with them the highlights of the rest of Cooper’s week. We consider them extended family.”

In 2020, Cooper received a skilled companion dog, Velocity, through the nonprofit Canine Companions. Velocity helps Cooper power through his lengthy treatments and offers him constant comfort.

“Velocity joins us for all of Cooper’s medical appointments. She can pick up objects, help Cooper take his socks off, and apply calming pressure to his legs during infusions,” Chris says.

Adds Cooper, “I have the best service dog ever!”

Cooper with his companion dog, Velocity
Cooper with his companion dog, Velocity

Living life to the fullest

Cooper is determined to not let his health challenges keep him away from the things he enjoys the most. When he’s not playing hockey or running around with his friends at school, Cooper loves to play basketball with his YMCA teammates. He’s also a burgeoning musician; Cooper is a drummer and keyboardist in the kids’ band, “Roscoe & the Doggies.”

“The best thing about Cooper is he’s just a typical kid,” Shoemaker says. “He’s silly and goofy. He’s happy as can be. He’s strong, tough, and resilient — but he’s mostly a 10-year-old boy who wants to do 10-year-old things.”

In his role as a Children’s Colorado Ambassador, Cooper is raising money for Child Life Services. He also advocates for others with Morquio syndrome through the National MPS Society, along with his mom who is on the board, and is involved with Canine Companions.

“We need to support those missions that directly affect our lives. Children’s Colorado has done (and continues to do) so much for Cooper and our family,” Chris says. “We are passionate about spending our time and energy supporting Children’s Colorado.”