Grand Rapids offers nation's only safe recreation center for immunocompromised kids

Children with weakened immune systems can play and learn without fear at the Children's Healing Center – and their families can find support as well.
This article is part of State of Health, a series about how Michigan communities are rising to address health challenges. It is made possible with funding from the Michigan Health Endowment Fund.

After Alice Scharphorn was diagnosed with cancer at 18 months old, the toddler spent 35 days in the hospital and experienced a host of complications. The experience devastated her parents, Jordan and Katy Scharphorn; and her teenage sister, Addison Johnson. Among the many challenges they experienced were the ways Alice Scharphorn's activities had to be restricted due to the immunocompromising effects of chemotherapy. But Alice Scharphorn's care team alerted the Scharphorns to a solution: the Grand Rapids-based Children's Healing Center, the nation's first year-round recreation center that provides a safe space for children with weak immune systems to play. 

When chemo caused pain and spasms in Alice Scharphorn's little legs, her physical therapists had little success with getting her to walk again. She'd also refused her medical team's efforts to get her to eat, requiring her to use a feeding tube. But the Children's Healing Center helped solve both problems.

"At the center, she was encouraged to physically exercise without feeling like that was the reason she was there," Katy Scharphorn says. "Instead of an adult trying to show her how to perform a movement, she was just running around with children. By going to the center, she was able to graduate from physical therapy. She stopped needing a feeding tube because the activity at the Children's Healing Center tricked her into doing what we needed her to do."
Children play at the Children's Healing Center.
The Children's Healing Center launched in 2015 as the dream of its founder and CEO, Amanda Barbour. After her own challenging medical journey left her isolated from the outside world, she wanted to create a place where sick children, their siblings, and their parents could connect with others, be active, and have fun. The Children's Healing Center serves families with children aged zero to 26 who live with a life-threatening or -complicating illness. Families typically hear about the Children's Healing Center through a medical provider or social worker. When one child in a family qualifies, the entire family participates in the center's programs.
Children and adults at the Children's Healing Center.
The center's physical space, located near downtown medical facilities and popular bus routes, uses water purification, air filtration, and cleanable antimicrobial surfaces to create an environment that is practically germ-free. Anyone entering the facility must answer health screening questions and have their temperature taken.

"When you think about COVID, that whole experience brought the whole world on par with the lives our members lead," says Melissa Block, Children's Healing Center director of growth and development. "Our programs are all focused on creating community, having fun, and building friendships. Our kiddos and families often lead very isolated lives. Providing a place for these families to rejoin life, and for kids to have normal childhood experiences, is really important to us."

Opportunity to connect

The children who come to the Children's Healing Center live with a variety of conditions: cancer, autoimmune disorders, bone marrow transplants, congenital heart disease, sickle cell anemia, and other conditions that weaken the immune system or make them more vulnerable to illness. The center is free for member families. Its programs are funded by charitable contributions and community support.
Children at the Children's Healing Center.
"We're looking to offer opportunities for families to come together and connect," says Autumn Haan, Children's Healing Center executive director. "... We saw through the pandemic what isolation and loneliness felt like. For some families, there's no end in sight."  

Age-specific programs include tummy time for babies, free play for younger kids, a preschool that runs three mornings a week, and teen and young adult programs. The center hosts day camps throughout the summer, and school-break camps during the school year. These camps offer immunocompromised kids opportunities to have the same experiences as healthy kids, but in a safe and clean environment. For convenience, the Children's Healing Center also offers support groups for parents while their kids are doing activities.
Children and adults at the Children's Healing Center.
"A lot of families that have had to isolate as a result of medical complexity [are] able to enter a safe space where they feel comfortable coming," Haan says. "They can really leave the stress of that illness at the door. For some families, it's the first opportunity that their kids have had to interact with other kids. It's also an opportunity for parents to be in the same room, share their journey, and offer support and comfort to one another."

Support for the entire family

The Scharphorns have now been going to the Children's Healing Center for more than three years, and they've experienced numerous benefits as a result.

"Now, Alice looks healthy and she appears healthy," Katy Scharphorn says. "But she's immune-suppressed and we have to protect her from [rejection of her transplanted liver]. Our need for the Children's Healing Center is a little bit less obvious but it's still important."

Alice Scharphorn isn't the only Scharphorn family member who's found healing at the Children's Healing Center. Addison Johnson struggled with her sister's diagnosis in ways that her own friends and teachers could not truly relate to. The Children's Healing Center's teen and sibling programming brought new friends into Johnson's life who shared her experience.

"When we started going to the Children's Healing Center, Addison met children with serious illnesses and she met siblings of children with serious illnesses," Katy Scharphorn says. "The first time we came home from the center, she told me that, for that hour or two, it was almost like we were normal."

Katy and Jordan Scharphorn found much-needed support and respite, as well. The Children's Healing Center's Little Tots preschool and other programs helped Alice Scharphorn become school-ready even while she had to be isolated from others. But the programs also allowed both of her parents to keep their jobs, rather than one of them having to stay home to care for her. The programs also helped identify and address developmental delays that Alice Scharphorn experienced due to her chemotherapy and eventual liver transplant.

"She's three years out from her liver transplant now, far enough out that she can go to public school. She started kindergarten this year," Scharphorn says. "Without the Children's Healing Center, she would have not had that foundation of preschool. Chemotherapy has a lot of survivorship effects — developmental delays and physical delays that often don't become apparent until children start school. Sometimes, by then, it's too late to intervene. The Little Tots program ... offered us the opportunity to check cognitive delays because of her chemotherapy and get her used to the idea of going to school."

Haan and Block plan to replicate the Children's Healing Center model throughout the nation and around the world so that other families can experience the same benefits as the Scharphorns. As the mom of a child who recovered from cancer, Block speaks from experience with the need for specialized support. She says patients receive very specific guidance while they're going through treatment in a hospital, but once they leave the hospital they're mostly on their own.
Children at the Children's Healing Center.
"We see ourselves as a continuum of care," Block says. "We work very closely with the hospitals so we can best support our members. We have families that come to us from all over the state, all over the country, and from different parts of the world. We have built this beautiful community of people who can uniquely identify with circumstances that the outside world doesn't quite understand."

Estelle Slootmaker is a working writer focusing on journalism, book editing, communications, poetry, and children's books. You can contact her at Estelle.Slootmaker@gmail.com or www.constellations.biz.

Photos courtesy of Children's Health Center.