When 11-year-old Trinity Walker arrives for school at Quest Academy, she’s like a “second burst of sunshine,” said Karen Scott, care coordinator for the publicly funded Longview school for students with behavioral problems or special needs.
Trinity usually greets her teachers and classmates with bright smile, a hearty pat on the back or an enthusiastic bear hug. On Wednesday, she raced down the hall toward Scott. She was a purple blur before engulfing Scott in a big embrace on “Purple Day,” an event organized specifically in Trinity’s honor.
The annual celebration at Quest Academy is a reminder of what sets Trinity apart from the other students: She lacks an essential enzyme that breaks down cellular waste.
“She has 32 doctors, and it takes 11 prescriptions to manage her symptoms,” including her glaucoma and nervous system complications, said her mother, Courtney Walker of Woodland.
Trinity suffers from a rare genetic disease called mucopolysaccharidoses, or MPS. Her particular variation of MPS occurs once in every 70,000 births, according to the National Institute of Health.
Without the right enzyme, Trinity’s body can’t break down long chains of sugars in her cells. The condition causes developmental delays, impaired motor function, hearing loss, glaucoma and arthritis, among other health complications. Most children affected by MPS do not live past their teenage years.
“Trinity is way more functional than her same-aged peers,” Walker said. “A lot of 11-year-olds (with MPS) can’t stand on their own … and they have feeding tubes.”
Trinity has neither of those, but her illness affects her intellectual development, so she’s “very baby-like” in most of her behaviors, her mom said. Trinity attends Quest Academy because she needs more academic, physical and emotional support than most traditional school districts can provide.
“It’s more than just needing eyes on her. It’s hands on her, because she can’t keep herself safe,” her mother said. For example, Trinity’s MPS causes her to feel pain differently, so she wouldn’t know to pull her hand off a hot stovetop if she was getting burnt.
“It’s hard on families. Ninety percent of families who have a child with MPS end up splitting, and I’m no exception,” Walker said. Trinity’s father still plays a role in his daughter’s life, Walker said, and he helps at the school when Walker isn’t immediately available.
Some days it’s challenging to do all the grooming, bathing, diapering and medications as a single mother. But Walker said the way Trinity’s “brain and body are so different” make her daughter “so extremely affectionate.”
“Not developing like a typical human means she doesn’t develop the ugly side of being a human,” Walker said. “She doesn’t know hate or fear. She’ll never learn to hold grudges. … I’m thankful that she doesn’t know she’s sick. She thinks she’s normal, … that the kid in the mirror is the coolest.”
For the teachers at Quest Academy, Trinity is a “ray of sunshine,” said Scott, the care coordinator. Trinity has spent almost five years at Quest Academy, transferring from the Vancouver site to Longview when the new school opened on Eighth Avenue in 2016.
“It’s so amazing to me because we didn’t know Trinity very much when she started, but she’s really brightened up our lives,” Scott said.
Trinity has endless love to give, Scott said. “She makes us feel so special.”
The school has celebrated “Purple Day,” or the international awareness day for MPS, since Trinity enrolled at Quest Academy, Scott said. Purple is the color used to represent the disease.
For students and staff, the day usually includes purple outfits, special snacks, and fun activities, like planting purple flowers or spraying purple silly string all over the teachers.
“Because her disease is progressive, she won’t have a long life span,” Scott said. “It just helps to support her while she’s here with us. And it gives her family members memories to look back on.”
So far, there is no cure for MPS. Trinity’s mother said doctors told the family there was a treatment “on the horizon” when Trinity was diagnosed seven years ago, but there are still no approved treatments for Trinity’s version of MPS.
“There’s trials all the time,” but none of the research has been fruitful. Walker added that research is often slow going because MPS medicines are not a “lucrative” industry, due to the disease’s rarity.
Fundraising for MPS research is often left to parents of MPS children, Walker said. That’s why awareness events like Quest Academy’s Purple Day are so important, she said.
“Awareness is the first step in finding funding,” Walker said. “My hope is with these awareness days is that one day there will be (a treatment) that works. It might not save Trinity’s life, but it could save another family.”