A network of volunteers from several companies have stepped up to change the lives of a Calgary family. The focus is an adorable toddler with a life-threatening condition.
Two-year-old Jake Davis was diagnosed as an infant as ERCC1-deficient. It basically means his DNA doesn’t repair at a cellular level. It’s extremely rare.
“There are fewer than 10 cases that are known worldwide,” explained Dr. Eliza Phillips, a medical geneticist who is a member of Jake’s treatment team with Alberta Children’s Hospital.
The condition means Jake battles many health issues, and that he has a long road ahead.
“His growth, liver, kidney function and overall prognosis. Overall, how long he’s expected to live,” Phillips said.
But young Jake is all smiles on a recent Saturday afternoon in his family home on the outskirts of Calgary. A small crowd gathered around his play corner in the basement where he is giggling, climbing and honking the musical horn on his favourite ridable car.
“If, by the grace of God, Jake makes it into his second decade of life, that’s our goal,” his tearful mom Ashley Davis said.
Ashley and Jake’s dad, Mathew, explained the complexities to navigate everyday life. Since UV rays can be deadly for Jake, just eight minutes in the direct sun can cause third-degree burns.
“Jake is not exposed to UV higher than a rating of 1,” Ashley said.
It means every single venture outside their yard is planned meticulously in advance, including going to play centres and to the grocery store.
“We need to know where are we parking, what way is the car facing,” said Mathew.
The family never leaves the house without a meter that measures UV everywhere they go. Even fluorescent light bulbs can burn little Jake.
“In the summer months, he typically is not outside between 8 a.m. and 8 p.m. — he has to be strictly indoors,” said Jake’s mom.
When he is outside, Jake wears a long cloak that covers his entire body, which can draw unwanted stares and outbursts from strangers.
“It’s a challenge,” Mathew admitted.
Jake’s family tried their best spending thousands on a film coating on their windows to stop the UV rays from coming inside, however it quickly broke down and left a messy, foggy covering that didn’t protect their son effectively. The couple launched a search for windows specially designed to block UV.
That search lead them to Hood River, Ore., where manufacturer Cardinal Glass specializes in UV-free windows. Their advanced technology is one-of-a-kind.
Once Cardinal said they could make the windows the Davis went to the bank to take out a loan. They also found local company Centra that would work alongside Cardinal to do the install and the framing.
“It was all coming together and really we were the happiest people ever,” Ashley said.
A team from Centra Windows visited the family home. Then they came a second time under the guise of needing to take more measurements. But that second visit came with a huge surprise: the renovation would be free.
“The entire install. The windows, the glass, everything,” says Mathew.
The donation means the couple now has funds to upgrade their furnace and water system, so Jake has the best environment possible to thrive.
“They were insisting on the highest level of glass, so Jake had 99.8 per cent coverage,” Ashley said, holding back tears. “To have our financial security in tact, that’s stress relief you can’t describe. Knowing our son is safe, you can’t describe that.”
It took months of planning to ship the glass from the U.S., assemble it in Calgary and then coordinate a massive crew of people to get the entire house done in one day.
“We have 26 windows today and two doors… 35 volunteers on site here today,” Centra Windows VP Emily Parson said while surrounded by a hive of activity with saws, ladders, measuring tapes and workers.
Even Calgary restaurant Flores and Pine donated a food truck for the day so whenever anyone got hungry, there was food to eat.
The Davis’ are quick to mention Beaver Tooth Mulching, who donated mulch for trails and the trees of their backyard for Jake to get fresh air in the shade during summer.
After the entire install was done, the moment came when Jake could finally look outside his window at those trails. His parents said it was something he hadn’t been able to do before.
The moment is almost too much for his mom and dad to handle.
“It’s phenomenal just to see him be that excited,” Mathew said. “The ability to be that close to the outside and be that safe is phenomenal.”