Calgary child with very rare disease undergoes life-changing renovation

A network of volunteers from several businesses came together to change the life of a Calgary family. The focus is on an adorable toddler with a life-threatening illness.

Two-year-old Jake Davis was diagnosed as an ERCC1-deficient infant. This essentially means that its DNA is not repairing itself at the cellular level. This is extremely rare.

“There are fewer than 10 known cases in the world,” said Dr. Eliza Phillips, a medical geneticist who is a member of Jake’s treatment team at Alberta Children’s Hospital.

This illness means that Jake is dealing with many health issues and has a long road ahead.

“Its growth, liver and kidney function and overall prognosis. Overall, how long he should live,” Phillips said.

But young Jake is all smiles on a recent Saturday afternoon at his family home in suburban Calgary. A small crowd has gathered around his basement play area where he laughs, climbs and honks his favorite car horn.

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“If, by the grace of God, Jake makes it to his second decade of life, that’s our goal,” said his tearful mother, Ashley Davis.

Ashley and Jake’s father, Mathew, explained the complexities of daily life. Since UV rays can be deadly for Jake, just eight minutes of direct exposure to the sun can cause third-degree burns.

“Jake is not exposed to UV above an index of 1,” Ashley said.

This means that every adventure outside of their backyard is planned meticulously in advance, including trips to play centers and the grocery store.

“We need to know where we park, which direction the car is,” Mathew said.

The family never leaves the house without a meter that measures UV everywhere they go. Even fluorescent bulbs can burn little Jake.

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“During the summer months, he usually doesn’t go out between 8 a.m. and 8 p.m. He has to stay strictly indoors,” Jake’s mother said.

When outside, Jake wears a long cloak that covers his entire body, which can attract unwanted stares and outbursts from strangers.

“It’s a challenge,” admitted Mathew.

Jake’s family did their best by spending thousands of dollars on a film coating on their windows to keep UV rays from getting inside, but it quickly broke and left a gla*s coating. messy and foggy which did not effectively protect their son. The couple began looking for windows specially designed to block UV rays.

That search led them to Hood River, Oregon, where manufacturer Cardinal Gla*s specializes in UV-free windows. Their advanced technology is one of a kind.

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Once Cardinal said they could make the windows, the Davises went to the bank to take out a loan. They also found local company Centra who would work alongside Cardinal to carry out the installation and framing.

“Everything was falling into place and we were honestly the happiest people ever,” Ashley said.

A team from Centra Windows visited the family home. Then they came a second time under the pretext of having to take more measures. But this second visit was a huge surprise: the renovation would be free.

“The entire facility. The windows, the gla*s, everything,” says Mathew.

This donation means the couple now has funds to upgrade their furnace and water system, giving Jake the best possible environment to thrive.

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“They insisted on the highest level of gla*s, so Jake had 99.8 percent coverage,” Ashley said, holding back tears. “Having our financial security intact is a stress relief you can’t describe. Knowing that our son is safe, you can’t describe that.

It took months of planning to ship the gla*s from the United States, a*semble it in Calgary, and then coordinate a ma*sive team of people to complete the entire house in one day.

“We have 26 windows today and two doors…35 volunteers on site here today,” said Emily Parson, vice president of Centra Windows, surrounded by a hive of activity with saws, ladders , measuring tapes and workers.

Even Calgary’s Flores and Pine Restaurant donated a food truck for the day so that whenever someone was hungry, there would be food to eat.

The Davises are quick to mention Beaver Tooth Mulching, who donated mulch for the paths and trees in their yard so Jake could have fresh air in the shade during the summer.

Once the full installation was complete, the time came when Jake could finally look out the 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 mother and father to handle.

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“It’s phenomenal to see him so excited,” Mathew said. “The ability to be this close to the outdoors and be this safe is phenomenal.”

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