In the midst of the COVID-19 pandemic, eight-year-old Kaleb Bootsman was diagnosed with toxic epidermal necrolysis (TENS), a life-threatening skin disorder that causes a severe, painful skin rash that blisters and peels.

Without the protective barrier that skin provides, infections can develop and cause serious complications, including bacterial infections, sepsis, multiple organ failure and death.

In Kaleb’s case, the skin disorder spread to his mouth, including the lining of his mouth and airways, making it difficult to swallow and breathe, and to his eyes, causing damage to the corneas.

Kaleb needed multiple surgeries, including having amniotic membranes attached to both eyes to help them heal, and regular dressing changes every other day – a process that took 2-4 hours and required sedation.

Being so far from their home in Crandall, Manitoba, the HSC Children’s Hospital staff became the support network that Kaleb’s parents, Leah Bootsman and Kyle Brown needed as they dealt with the constant trials that this life-long disease brings.

“The staff at Children’s is absolutely amazing, and our family wouldn’t be where we are today without them,” says Leah. “Being in a Children’s Hospital in the middle of a pandemic, 3.5 hours from home with no visitors allowed, just my husband, Kyle, myself and Kaleb, they made sure our needs were always met the best they could.”

Child Life Specialist, Stephanie, was the family’s saving grace.

“We were brought new movies daily. Although Kaleb couldn’t see for most of his stay, the comfort of movies he knew by heart – just hearing them made a difference.”

Child Life staff arranged for Kaleb’s sister, Lakelyn to come visit on her birthday so she could celebrate with her family, and they even helped Kaleb make her a gift.

“They all made a small impact in their own ways and we are so grateful for them,” says Leah, who credits the staff and volunteers for stepping in to read to Kaleb or stay with him so she and Kyle could step away for a moment or go for a decent meal. “The hospital staff made a horrifying experience memorable in good ways. They are all superheroes in their own way.”

The family still makes the long drive from Crandall to the hospital monthly, sometimes weekly, for appointments as Kaleb still has complications, including problems with his eyes. But the 11-year-old doesn’t let the pain of his life-long disease stop him. Most days, he’s still a normal kid who enjoys playing Xbox and hockey, showing cattle and being on the farm when his eyes allow it.

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