The Barber's reside in Lanark, Ontario - photo submitted
Five-year-old Beckett Barber has been through a lot.
Since the day he was born prematurely, Beckett has had to fight for his life. On his second day alive, a nurse was checking on Beckett, who was attached to monitors and being frequently attended, and he was seemingly stable in the NICU.
It was early in the morning, his father Chris thinks it was around 2 a.m. He and his wife Leanne are asleep, happy their miracle baby has completed their family of five.
While all appeared calm on the surface, the nurse had a hunch. She looked at Beckett and sensed something was wrong. Acting on her instincts, she called in the doctors for a checkup.
The very moment they walked into the room, Beckett’s lungs collapsed and the monitors, previously as silent as a winter’s night, lit up as if they were Canada Day fireworks, and an emergency surgery was underway.
That wasn’t all little Beckett experienced in his first week alive. Two days later, he was intubated and placed on a ventilator after he stopped breathing. Heart surgery followed and again, a recovery.
This is the story of the Barber family. It’s a cruel and relentless game of whack-a-mole. One health issue arises for Beckett, it’s managed and perhaps even resolved, but then another comes up. It’s a merry-go-round of appointments, sleepless nights, and questions with few answers.
The latest challenge comes by way of Mixed Sclerosing Bone Dysplasia, or MSBD. A disease so rare that the Barber’s were told Beckett may very well be the only person diagnosed in Canada.
A person is diagnosed with MSBD when indicators of multiple bone diseases are present. It’s a genetic disease, with the Barber’s receiving the diagnosis a little over a year after Beckett was born.
For Beckett, his MSBD metastasizes. One particular tumour on his leg impacts his mobility. There’s another on his arm, and the doctors are looking at another lump on his head. They haven’t been able to determine if they’re cancerous or benign.
Outside of his medical battles, Beckett is a normal kid. He loves to fish, play with his siblings and when he can, run around. Although Chris and Leanne have to limit the amount of time he can be active, because the pain soon follows, causing Beckett to scream long into the night.
“Once that pain medication wears off, I wouldn’t wish that on anybody,” Chris said.
“Just hearing him crying out and begging for help, begging for it to come out, it’s just heartbreaking.”
The Barber’s
The Barber family, which includes Beckett’s older siblings in 11-year-old Hunter and eight-year-old Kataliya, moved from Kanata to Lanark during the COVID-19 pandemic, and now live in a cabin Chris built on property he bought with his father.
Leanne is Beckett’s full time caretaker, making sure he does school work, and she gives him puzzles and other activities he can do while sitting, while making sure his pain is managed to the best of her ability. On some nights, when the pain is too great, they have to give Beckett morphine so he could get a couple hours of sleep.
Leanne herself is fighting chronic pain. Afflicted with a myriad of major health conditions, there’s few moments in a day where she is not suffering. Chris said there’s been over 30 surgeries between Beckett and Leanne.
When they’re shuffling between appointments, it’s all systems go. Beckett is at CHEO on average three times a week, and Leanne tries her best to stack multiple appointments on a given day to minimize the amount of drives into Ottawa.
“It’s not as hard for me to come (home) and be all positive and happy,” Chris said. He spends most of his days outdoors for work, which is installing custom upholstery as one of his businesses and teaching basic survival skills for his other. That allows him to escape through his work, which he is well aware of.
“For my wife, and she’s very positive, it’s just she’s with it all the time, 24/7 she’s taking care of him and dealing with those struggles.”
Hunter and Kataliya adore their brother. Chris said they’re incredibly supportive, going so far as saying Kataliya is “like a second mom,” to Beckett. Beckett idolizes Hunter, and the pair are best friends.
With both Hunter and Kataliya, Chris and Leanne were told they had as low as a 2% chance of becoming pregnant naturally. With Beckett, they underwent IVF treatments. It’s given Chris a new outlook on life.
“Our whole family is a miracle, and I’m just grateful for every single day I have with my kids and my wife.”
The hidden costs of healthcare
The financials behind Beckett’s medical journey up to this point is extensive. While the Canadian healthcare system covers a majority of upfront fees, there’s extra costs that are not recovered. Gas money, accessories for Beckett’s feeding equipment, and certain medications to name a few. You can claim some of those expenses on your taxes, but you do not get fully reimbursed.
With the rarity of the disease and an uncertain outcome, options are wearing thin. The Barber’s have now been pointed south of the border, to look at treatment options in the United States.
They were referred by St. Jude’s Hospital to the UCLA Mattel Children’s Hosptial Pediatric Bone Disorder Program, and Beckett has recently been accepted.
With that program will come incredible expense. Flights to California, hotel stays, the consultations and the care Beckett will receive will all come at a premium.
A family friend started a fundraiser to try and ease the burden. It’s already raised over $5,500.
The Barber’s are incredibly grateful for that fundraiser, with Chris saying the outpouring support and kind messages have put him at a loss for words.
Beckett being accepted into the program at UCLA has given the Barber’s hope. Hope there’s a path forward. Hope that they may find a cure. Hope that maybe one day, Beckett will be pain-free.
But it’s faith that keeps his father going.
“Prayer, honestly…that’s the biggest thing. I used to have more of a negative outlook and kind of like a ‘poor me’ way of looking at things, and I found that was just a roller coaster downhill anytime I had that mindset.”
“Every day is a blessing. Beckett is a miracle. He’s already beat the odds in so many different ways. Just miracles have happened all around him ever since the day he was born.”
Story by Grant Deme
You can listen to our interview with Chris Barber below.
The interview has been edited for clarity and brevity.