What makes a couple with four young biological children decide to adopt two teenage boys with overwhelming disabilities from a Ukrainian orphanage? Jackie of Salt Lake City, Utah, would tell you she didn’t decide. She and her husband, David, felt called to take these boys in. That calling, rooted in a strong Christian faith, was the catalyst for their decision to pursue the boys with all of their hearts. But they did so with reserved expectations. They’d bring the boys home, but would they thrive?
Meet the boys
Miles lived his entire 16 years of life in a crib at an orphanage in Ukraine without access to adequate medical care for cerebral palsy. The lack of socialization, physical touch and nutrition resulted in stunted growth and incredibly low body mass. At the time of adoption, he weighed only 15 pounds – less than an average 6-month-old baby. Neglect had left him nonverbal and non-ambulatory.
Jonah, who has spina bifida and lived at the same orphanage as Miles, dreamt of living with a family. The adoption went through just in time, when he was 16, as he was close to death. When he arrived at his new family home, he had life-threatening pressure sore complications caused by inadequate care. He had osteomyelitis (an infection in the bone) and was nearly septic. Though the two boys had no interaction with each other at the orphanage, they’re now brothers for life.
A turning point
When the family arrived home, mobility was the last thing on the adoptive parents’ minds as they addressed Miles’ nutrition and Jonah’s emergent wound care.
The boys’ doctors advised the family to wait on mobility and seating. For six months, Miles was pushed around in a baby stroller and Jonah continued sitting in an ill-fitting chair. But Jackie and David trusted their instincts and pressed for more – and they found it at Shriners Hospitals for Children — Salt Lake City. Everything changed with the help of the surgeons, seating specialists and physical therapists.
“Both of my boys are incredibly medically complex, but Shriners Hospitals doesn’t even bat an eye,” said Jackie. “Everyone at the hospital has been so accommodating, and no mobility challenge presented to them has been outside their scope. A safe, custom wheelchair for Jonah is what prevents pressure sores that could kill him. For Miles, encouraging his mobility is ultimately what opened up his world cognitively.”
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A whole new world for Miles
The staff of the hospital’s wheelchair and seating and therapy services departments wanted to give Miles a way to be mobile as soon as possible because of the link between mobility and cognition.
Once his therapist placed him upon a crawler – a small board with wheels (like a square skateboard) – he experienced self-propelling for the first time. His face lit up with joy as he began scooting himself around, and Jackie began imagining all the possibilities for his quality of life. They also swapped the baby stroller for a custom wheelchair.
The mobility interventions made a marked difference in Miles’ cognition. He started making different noises, babbling more and interacting with his environment. His improved nutrition has been incredibly important, but Jackie said the therapy he’s had has made the most dramatic difference. “When a 16-year-old is the size of a baby, you assume nutrition is to blame, but it was also the lack of exposure,” said Jackie. “Once we introduced mobility, he started changing before we even upped his calories.”
Matt Lowell, MPT, said treating the boys has been amazing to watch. “We have really enjoyed working with the family and seeing the boys develop, not only their mobility but their social and physical health as well,” he said. “Miles had gained so much weight that from the time his chair was ordered to the time it was delivered, we actually had to send it back and go to the next size. The family is so caring, and they’re such great advocates for the boys.
Innovative answers for Jonah
Jonah’s unique needs were met head-on by the wheelchair and seating team’s innovative approach. Jackie marveled as the seating specialists created his chair right before her eyes. “They traced his feet and cut the shape out of a foam cushion, melted and molded materials, sewed a cover for the footrest and customized his seat cushion to accommodate a limb difference,” said Jackie.
Jonah’s manual chair fits him perfectly and comes equipped with power assist, which he controls with a bracelet, essentially making his manual chair a power chair when he needs it. Jonah can propel around the house, and for longer family walks or going uphill, he can activate the motor so he doesn’t get worn out. It’s also helpful for joint preservation, as wheelchair users are prone to having shoulder issues from overuse.
Living a full life
It’s been a year and a half since the boys were adopted, and they’re thriving. Miles has grown more than 12 inches and tripled in weight. He’s even begun talking, saying “gaga” and “baba.” Jonah’s had critical wound care and is sitting up taller, thanks to spinal fusion and endless mobility interventions. The parents and their specialists at the Salt Lake City Shriners Hospital are dreaming big for the boys. Jonah is on the hospital’s waitlist for an adaptive bike, and they’re looking into self-propel wheelchair options for Miles.
The boys have put down strong roots in their new, loving home. But now their definition of home is expansive in a way it’s never been. They’re at home in their special needs schools. Miles is at home rolling around on the floor with his siblings and playing in the backyard. Jonah is at home on his Special Olympics basketball team, where he deftly maneuvers his chair on the court. And they’re at home at Shriners Hospitals for Children.
More than a hospital, it’s a place where the staff and Shriners International fraternity members commonly refer to patients as “our kids.” Parentless for 16 years, Jonah and Miles now have countless individuals in their lives eager to love them as their own, dedicated to helping them reclaim all of those lost years.