Kaleb Francis (right) with his cousin. Image from GoFundMe.com

Boy with terminal disease gets his wish – a trip to Disneyland – but family still looking for support

Kaleb Francis, 4, was diagnosed last month with X-linked myotubular myopathy

A boy suffering from a rare disease will see his wish come true – a trip to Disneyland – but his family is still looking for donations to offset the costs of caring for the terminally ill four-year-old child.

In November, Kaleb Francis was diagnosed with a muscular disease known as X-linked myotubular myopathy, said Haillee Little, his mother. She wants him to see the famed theme park before his disease progresses further.

“Right now he still has a little bit of mobility left,” Little said. “He’s most inclined to enjoy his time right now.”

Little’s family launched a fundraising campaign on the GoFundMe platform last week to cover expenses including trips to Vancouver, where Francis is receiving specialized medical treatment at the BC Children’s Hospital – and to realize his dream of visiting Disney’s amusement park in Anaheim, Calif.

Little gave birth to Francis in Campbell River in 2014, and they now live in Nanaimo.

Francis requires a variety of specialized medical equipment, including a fitted wheelchair, and the expenses aren’t all covered, Little said. By Tuesday afternoon, the campaign had raised nearly $1,300.

That’s not including a big contribution from Chad Braithwaite, who owns the Fitness Etc. retail chain in Campbell River, Courtenay and Parksville.

Braithwaite offered to cover airfare and accommodations for a trip to Disneyland for Francis and his family after learning about the boy’s story from an employee, he said.

“I have kids of my own, so it pulled at my heartstrings a bit,” said Braithwaite, a Campbell River resident. “It’s something our stores strive to do, we’re always looking to give back to the community.”

Little extended her thanks to everyone for their help during a heartbreaking ordeal, and she urged people not to take their loved ones for granted.

“You never know what to expect in life, so hold your kids close,” said Little. “You never know what comes tomorrow.”

X-linked myotubular myopathy primarily affects the muscles used for movement, and it occurs almost exclusively in males, according to the Genetics Home Reference, a health information website maintained by the U.S. National Library of Medicine.

The disease can impair the development of basic motor skills such as sitting or walking, and can even cause difficulties with feeding among infants.

People with the condition are often unable to breathe on their own and require the support of a breathing apparatus. The disease also disrupts bone development and results in conditions including abnormal spine curvature.

The Genetics Home Reference also states that people with the disease usually only survive early childhood, although some have lived into adulthood.

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