It will never happen to me.
That’s what many people expecting babies think and hope for, dreaming and wishing for valedictorians, star athletes, happy tears at weddings.
But sometimes life takes a different path.
Kerrie Scofield and Emily Humiston, longtime Wilton residents, learned that five years ago, entering the world of atypical kids, and learning the special nature of the Wilton community.
Kerrie is a stay-at-home mom and Emily owns Tall Trees Landscaping in Wilton. Dana, their oldest child, is a Cider Mill student and cheerleader who enjoys gymnastics, the Wilton Children’s Theater, friends and cartwheeling across the lawn. Five years ago, along with her moms, she was looking forward to becoming a big sister.
But when younger brother, Jack, was born six weeks premature, it was evident immediately that things weren’t going to be as expected. Jack was unable to breathe or feed on his own without sophisticated medical machines, and he spent the first five months of his life in neonatal intensive care units in hospitals across the northeast.
As Kerrie recalled, doctors had painted a bleak picture for Jack’s prognosis. “They told us every unimaginable and horrible thing,” she remembered, including, “that my baby may never eat.”
In fact, it took two full years for doctors to finally make a diagnosis: Hypotonic (floppy) Cerebral Palsy, a rare condition thought to result from abnormal brain development in utero or during birth. The disorder may impact respiratory function, sight, hearing, intellectual ability, balance, and motor skills (including the child’s ability to hold their head up or sit and stand independently, thus the name).
But Kerrie and Emily looked at the positive: Jack’s condition wasn’t progressive, and early therapies make a huge impact. So the family agreed: they’d do everything they could for Jack. As Kerrie told GMW in 2019, “You never, ever give up.”
There have been hurdles: navigating the confusing U.S. medical and insurance system, magnified for parents with children requiring special needs and accommodations; expensive therapies and treatments that aren’t even covered by insurance.
But some of those treatments have made a tremendous difference. Immediately after diagnosis, Jack began physical therapy, and Kerrie, Emily and Dana saw marked improvement in just the first year. Jack defied the doctors’ predictions, learning to breathe on his own and eat pureed foods by mouth. Soon, Jack reached and passed other seemingly impossible medical milestones.
That’s when the family also found amazing support from the Wilton community.
Researching treatments, the couple learned about cutting-edge — but expensive — stem cell therapy that was available but not covered by insurance. Desperate, the couple set up a gofundme campaign, and Wilton quickly rallied around the family. They were stunned by the response, even from people they didn’t know, who contributed generously; others brought meals or offered to babysit.
“We feel blessed and lucky to live in Wilton.” Kerrie marveled.
In time they’ve been able to rely on other parts of the Wilton community in different ways they never imagined. For example, they point to a Wilton High School student who started a club called SibSquad that supports siblings of kids with special needs, and lets them know, as Kerrie explained, “you’re not always going through it alone and there are other people out there that understand what you’re going through.”
Most recently, the family was thrilled to be granted a wish from Make-A-Wish. While many families ask Make-A-Wish for experiences like trips to Disneyland or professional sports games, Kerrie and Emily thought about what would help Jack most.
Jack was granted a universal exercise unit and TheraSuit. The family had been traveling to an outpatient center in Long Island so Jack could work with therapists wearing this specialized body-positioning bracing suit that aligns the body as close to normal as possible in order to normalize muscle tone, and sensory and vestibular functions.
As Kerrie told GMW two years ago, TheraSuit has been transformative.
“The first day of his TheraSuit therapy he could not do anything on his own. But in that suit now he can stand in the corner by himself for two minutes, go from sit to stand, and walk with support. That is mind-blowing stuff for us to see!”
Now, with Make-A-Wish’s gift of a unit, Jack can do the crucial daily therapy at home, instead of having to travel hours away. Not only that, but the unit will grow with him, so he can use it for many years.
“It will literally change his life,” Kerrie said.
Always looking to the positive, it’s one more reason the family is thankful. “We’re so grateful to live in a community that supports us,” she added.
It points to something else the Scofield-Humiston family wants people to know about families like theirs.
“It’s okay to ask questions,” she explained. “That parents educate their kids that it’s ok ask question. Not everyone knows how to deal with this [special needs life]. Not everyone knows how to deal with these situations.”
Kerrie paused, before adding, “We’re so grateful to live in a community where so many people ask, ‘How can I help?’”
