‘I Feel Like I Fit in Here’: GR’s Children’s Healing Center Helps Immune-Compromised Kids Belong
Roan Collins’ white blood cells don’t work optimally, leaving his nine-year-old body vulnerable to illness.
His immune deficiency also makes the Caledonia 4th-grader vulnerable to something else, perhaps more challenging to fight off or fight through: isolation and loneliness. Because large crowds can be a minefield of germs, Collins often misses school field trips and outings that are routine for other families. A trip to the mall, summer festivals and even going to church on Sunday are off-limits.
Collins also has asthma, attention-deficit hyperactivity disorder (ADHD), is on the autism spectrum, suffers frequent migraines and has hearing loss. Despite all the challenges he faces, “he’s a really smart kid, but he’s lonely,” explained his dad, Bruce Collins.
Enter the Children’s Healing Center (CHC), a Grand Rapids-based facility that’s kept as germ-free as possible. It’s a place where families and their immune-compromised children – infants all the way through 26-year-olds in the young adult program – can come and belong, play or rest, learn and connect.
After Roan Collins’ first visit, he excitedly shared his feelings about the center, saying ‘Dad, I feel like I fit in here,’ Bruce Collins recalls.
It’s stories and kids like Roan Collins that keep CHC founder and executive director Amanda Winn laser-focused on the broad and expansive goals she has for the center.
“To have him feel that welcomed and invited … that’s really what’s most important for us,” she said.
A Personal Mission
Winn is acutely aware of how isolating it can be to have a life-threatening illness when you’re young. She was diagnosed with Hodgkin’s lymphoma, a cancer that starts in white blood cells called lymphocytes that are part of the body’s immune system, almost nine years ago. She’d just graduated college and was starting her career as a young architect. For someone in her early 20s, not being able to go to the mall, movies, church and other places she could socialize was difficult.
“It threw my whole life upside down,” Winn said.
As she worked on designing a recreation center through her work as an architect, the idea for the CHC came to her. She devoted herself to fundraising for the project while still working a full-time job. After five years of securing donations and backers, the center opened in 2015. Services are free of charge to families, who are typically referred by a medical professional.
One child in the family must have a medically-diagnosed condition to attend, but the doors are also open for moms, dads, and siblings to take part in programming, knowing that the isolation of an immune-compromised child can sometimes spread to others taking on caregiving roles.
“It definitely is an incredible resource for the entire family,” Winn said.
The center runs completely on donations and has received generous support from local philanthropists, businesses and foundations.
A $24,000 grant from the Blue Cross Blue Shield of Michigan Foundation is helping the CHC study how the programming at the center helps to increase well-being and quality of life for kids and the adults in their lives. The official study starts in early December with researchers from Helen DeVos Children’s Hospital and Calvin College’s Center for Social Research helping with the project. Winn expects to find improvements in mental and emotional health.
Earlier research showed that 90 percent of parents said the CHC helps reduce their stress and 97 percent of parents reported the CHC helps improve their moods.
“We feel that by strengthening families, we’re strengthening every person’s mental and emotional health,” Winn said.
Keeping Germs Away …
Because children with weak immune systems can get very sick when they’re exposed to germs, they’re often confined to their homes. Many times, family members also suffer isolation because they too miss out on large group gatherings. Making a space that feels comfortable, while also ensuring it is as germ-free as possible, is challenging. Many volunteers pitch in to make it happen, Winn said.
The CHC entry manages to be warm and welcoming. There’s no trace of sterility, with bright colors, kid-friendly décor and contemporary furnishings. To keep the center as germ-free as possible, people who enter are required to have their temperature checked and are asked questions about their current health status. Their personal effects are stowed, and they’re asked to either clean their shoes or remove them entirely. Everyone washes their hands before they go in to the main areas of the center.
Additionally, the center is furnished with vinyl and other easily cleaned materials, HEPA-equivalent, hospital-grade air filtration systems keep the air clean, and filtered water and other high-tech equipment helps to maintain a squeaky-clean environment. The center goes through more than 3,000 disinfectant wipes annually. Rooms are deep-cleaned after every use and any toys or equipment are also disinfected between each session.
… And Making Spaces for Play
The CHC has four main zones where activities and programming take place.
- Exploratory Play A hub for exploration, this space helps younger children work on their fine motor skills, reading and lets them engage in play-based learning.
- Active Fitness This space allows children to move and exercise. The CHC hosts a wide variety of fitness classes, group games and sports for the entire family.
- Art and Learning Group and educational projects take place here, including science experiments and therapeutic art sessions.
- Technology Zone A favorite space for teens and young adults, this area encourages hanging out and fun uses of technology, such as karaoke, movie nights and fitness-based video games. A stage lets kids explore their dramatic side.
“At the core of everything we do is social interaction,” Winn said. “All of our programming and activities get parents and kids engaging with one another.”
Bruce Collins said he’s had lots of conversations with other dads at the center in the parent’s lounge, a space where adults can do some work or unplug while their kids enjoy activities. He’s impressed by the strides that Roan Collins has made since finding the center. Because of his health challenges, there’s a lot he feels he doesn’t have control over, but the center is empowering.
“Roan really thinks that he can do whatever he wants in there,” Bruce Collins said.
Having a medically-fragile child isn’t a club you necessarily want to belong to, Bruce Collins said, but the CHC fosters a welcoming and inclusive environment for everyone who crosses the threshold.
“We’re all there because (the kids) have a life-threatening medical diagnosis. Everybody knows that everyone is different from the normal crowd, per se,” he explained. “I don’t think I’ve ever seen an incident where someone isn’t included.”
Learn more about the Children’s Healing Center here and enjoy more photos:
If you enjoyed this story, read these:
- Blue Cross Employee Raising Awareness of Trisomy 18
- Treating Moms-to-Be with Opioid Use Disorder
- Protecting the Smiles of Michigan Children
All photos courtesy of the Children’s Healing Center.