Beyond Morquio Syndrome: The Art of Thriving With a Rare Disease

Every Friday, 24-year-old Monique Hilson spends the better part of the day at Connecticut Children’s infusion center. There, she receives a medication to ease the effects of the rare disease she was born with.

To pass the time, she makes and shares art.

“Her artwork is incredible,” says Julia Gardner, BSN, RN, who provides care in the clinic. “It brightens everybody’s week.”

Monique’s talents earned her a scholarship to the University of Hartford, where she is on the verge of a degree in illustration. She loves “telling a story through an image,” she says.

Taken together, the images in her portfolio tell another story, too.

They’re a study in following your passion and having a care team who’s with you all the way.

Rare Disease Experts, 10 Minutes Away

Monique has Morquio syndrome, a genetic condition that affects just 3,000 or so people around the world. People with this condition are missing an enzyme that breaks down a certain sugar in the body. As the sugar builds up, it changes how bones and muscles develop, and damages cells and organs. It can affect everything from mobility to heart health to vision.

Is there a cure for Morquio syndrome?

The disease gets worse over time, and currently, there is no cure. But weekly infusion therapy, which replaces the body’s missing enzymes, can slow its progression. Many people with Morquio syndrome need other interventions too, like surgeries for orthopedic conditions. Monique’s first surgery was at age 3, to stabilize her spine and hip. A few years later, at age 7, she had another surgery to treat compression in her spinal cord.

These surgeries were her most vivid early memories of Connecticut Children’s, but they’re far from the only ones. It takes a vast and knowledgeable team to care for patients with rare diseases like Morquio syndrome. So for as long as Monique can remember, she’s seen Connecticut Children’s experts in nearly specialty, including medical genetics, orthopedics, pulmonary medicine, neurosurgery, cardiology and physical therapy…

“Everyone at Connecticut Children’s is excellent. They’ve always made sure I was included in every medical decision, no matter how old I was,” she says.

Now that she’s in her 20s, some of her care has transitioned to adult practitioners. But much of it remains here at Connecticut Children’s, including her weekly infusions under the care of genetics expert Joseph W. Tucker, MD. In addition to being the place she’s known her whole life, it happens to be just a few miles from her home in Hartford.

“I know that a lot of people have to travel far just to come here,” says Monique. “I live 10 minutes away. I’m so grateful for that.”

Care for Today, and a Bright Future Tomorrow

Monique’s Connecticut Children’s care teams all have one goal in common: Helping her feel her best, so she can do what matters most to her. Thanks to her infusions, she has the energy to enjoy her close-knit family, including mom Wyvonia and a big crew of aunts, uncles and cousins who live on the same street. Each year, they travel to Alabama for an extended family reunion, where she and her uncle have a tradition of tearing around on a four-wheeler.

“My mom isn’t the biggest fan of that,” Monique laughs. “I like to go really, really fast.”

And of course, feeling strong also means she’s able to focus on art.

With help from her physical therapy team, she switched to a motorized wheelchair a few years ago, an upgrade that’s transformed her college experience. The chair is customized for her, making it easier to lug her many art supplies around campus. Thanks to a lifting feature, she is finally able to sit at the communal art tables with her classmates.

Monique describes herself as quiet and reserved, and so advocating for herself hasn’t always come naturally. But these days, she is adamant about doing it anyway, and encouraging other young people to ask for what they need to pursue their dreams. She credits Connecticut Children’s for that lesson.

“In the past, I struggled with speaking up for myself. But coming to Connecticut Children’s, I’ve learned that it’s OK to ask for help,” she says. “Their thoughtfulness and their graciousness has made an impact on my life and on my health.”

Meanwhile, the future beckons. Once Monique completes her degree, she’d like to illustrate children’s books, and perhaps work in advertising. Whatever lies ahead, her care team will be beside her.

“Monique is talented. She is resilient. She is strong. She achieves whatever she sets her mind to,” says Julia, the infusion center nurse. “She has touched so many of our lives just by being our patient. I know she can inspire other young adults too.”

“The care that I’ve received is beyond imagination,” says Monique. “I’m so grateful that as I pursue my goals for the future, I can count on Connecticut Children’s.”