Souris Lions club member Curtis Laybolt presents a new wheelchair on behalf of the organization to six-year-old Nevaeh Jacklyn.
©THE GUARDIAN/Steve Sharratt
Genetic skin condition gets in her way, doesn’t slow her down
Going to the beach is an intensely painful experience for Nevaeh Jacklyn.
The six year old never misses an opportunity to go with her family, but must slide on her behind or her belly to get to the water.
That’s because crunching across the sand in her bare feet is like running on sharp nails and tacks, thanks to a genetic skin condition that gets in her way – but doesn’t slow her down.
“When I get in the water I can float on my tube and it’s really nice," says Nevaeh, who started Grade 1 this year at the new Souris Regional School.
The salt water at the beach actually soothes her painful condition that causes burning blisters on her hands and feet and robs the youngster of much of her mobility.
And while it’s a far cry from summer, the Souris Lions Club pitched in to deliver an early Christmas present. A brand new wheel chair was presented by the club to the Jacklyn family and now she can get around her home in more comfort.
“It seems to be just the right fit for her and the family,’’ said Lions treasurer Curtis Laybolt.
Nevaeh suffers from epidermolysis bullosa (EB), a skin disease present in 1 out of every 20,000 live births and affects the second layer of skin protection. It means her skin can become so fragile that every touch or the slightest friction—such as getting dressed or showering—can cause severe and painful blisters all over the body.
In the worst case scenarios, EB can require daily bandage changes and even feeding through a tube cause of blistering in the throat. Fortunately, Nevaeh has a milder level which mainly affects her hands and feet but can leave her in tears.
“There is no cure and the last time we were at the IWK, they told us it could take another 12 years before there is any breakthrough or possible help,’’ said mother Melanie.
So the Jacklyn family was delighted with the new chair that can be adjusted and grow with their daughter. She can walk and run like any other kid, but when her skin disorder flares up she is left in pain.
“She can tell when she is getting the blisters,’’ says her mom. “It gets hot and burny as we call it. So we’ll have to watch her hands especially when using the chair.”
The new wheelchair will take up residence in the Jacklyn’s home of Michael and Melanie while Nevaeh (heaven spelled backwards) uses an older unit available to her at school.