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

Island boy with terminal disease gets his wish – Disneyland – 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.

READ MORE: Simple falls causing serious injuries to people over 65

READ MORE: North Okanagan site of first RCMP naloxone test project

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.


@davidgordonkoch
david.koch@campbellrivermirror.com

Like us on Facebook and follow us on Twitter

Just Posted

WATCH: Cops for Cancer Tour de Rock pedals into Parksville Qualicum Beach

Volunteer LeMoine doesn’t get locks shaved but still finds a way to raise funds

Side Bay access confirmed as North Island forest service roads get a minor facelift

Remote beach route no longer ‘up in the bureaucratic air’ thanks to COVID-19 recovery funding

Vancouver Island parents say schools not appropriate voting stations

Elections B.C. says site of polling stations not yet determined, working with Dr. Henry’s office

PHOTOS: 2nd calf in a month confirmed among Southern Resident killer whale pod

Center for Whale Research said they will eagerly await to observe the calf to evaluate its health

Duncan man at large after massive Alberta drug bust

Eight people are facing 33 charges in what police have dubbed Project Incumbent

B.C. records 98 more COVID-19 cases, most in Lower Mainland

One new senior home outbreak, Surrey Memorial outbreak over

97 distressed horses, cats and dogs seized from farm in Princeton

RCMP assisted as BC SPCA executed search warrant

Neighbours concerned about proposed apartment complex on Island Highway

City says it’s early in the process, still, and residents will ‘absolutely’ have their concerns heard

Trudeau ‘disappointed’ by RCMP treatment of Sikh officers over mask issue

World Sikh Organization of Canada said taking Sikh officers off the front lines constitutes discrimination

Liberals reach deal with NDP on COVID-19 aid bill, likely averting election

NDP and the Liberals have reached an agreement on COVID-19 sick-leave

$250K reward offered as investigation continues into Sea to Sky Gondola vandalism

Police also asking for specific footage of Sea to Sky highway around time of incident

Money laundering inquiry delayed over of B.C. election: commissioner

Austin Cullen says the hearings will start again on Oct. 26

Lockdown quickly lifted at Nanaimo District Secondary School

NDSS was under lockdown mid-morning Friday, Sept. 25

B.C. salmon farms challenge activists’ demands for site closures

News reporting also unfair, inaccurate and distorted

Most Read