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Saanich family grappling with baby’s cystic fibrosis loses everything in fire

Mother was at son’s medical appointment when she was told by her husband: ‘Our house is on fire’
Williams family
A portrait of Dustin, Kristy and baby Luke Williams. Says Kristy: “Dustin and I have not cried at losing our house but what brings us to tears is the community support.”

Dustin and Kristy Williams were already grappling with the sobering reality that their newborn son Luke’s cystic fibrosis diagnosis means his life will be dogged by health complications.

Now, they are trying to find a new home after fire ravaged their Saanich residence.

Kristy was at an immunization appointment with Luke on the afternoon of May 28 when she got a call from Saanich police that flames were coming from their Ridgewood Place home.

She called her husband and in a state of shock told him: “Our house is on fire.”

Dustin said as he crested the hill overlooking the home, the sight of seven fire trucks, police cars and neighbours on the lawn told him it was a no small blaze.

“I saw the flames shooting from our roof, that’s when I knew it was a major fire,” Kristy said.

The fire destroyed everything, including Kristy’s wedding dress and the couple’s wedding rings.

The family is currently staying with friends and Dustin, who works as a civilian employee for the Department of National Defence, has recently learned they can stay in a home at CFB Esquimalt for a few weeks.

As the couple looks for permanent housing, they have to overcome Victoria’s near-zero vacancy rate and Luke’s cystic fibrosis, which renders certain types of homes — anything with carpet or older homes with dust buildup — unsafe.

“We want to provide a nice house for him because it’s where he’s going to spend most of his time,” Kristy said.

Luke was diagnosed with cystic fibrosis on Feb. 13, 19 days after he was born.

Dustin and Kristy were both carriers of the gene mutation that causes cystic fibrosis and Luke was one of the 25 per cent of children with carrier parents who got both defective genes.

One of the words that accompanies cystic fibrosis in online searches is “fatal,” something which terrified the couple.

“You’re holding your baby and you think how many years do I have with my son,” said Kristy, breaking into tears.

Cystic fibrosis is a genetic and irreversible disease that causes a buildup of mucus in the lungs and mucus membranes, making it difficult to breathe.

People with cystic fibrosis live to a median age of 50.9 years in Canada, according to research published in the Annals of Internal Medicine.

“Almost all CF affected children end up with the progressive disease, eventually it does get worse over time,” Dustin said. “So that was heartbreaking to know that his quality of life would be so much less than what we have.”

As he grows up, Luke won’t be able to play in the sand or the dirt as other little boys do, Kristy said.

Kristy was introducing Luke to other babies in the neighbourhood with the hopes he would have a network of support when he entered elementary school.

So in addition to losing their belongings, the fire has ripped them from their community. It’s still unclear if the home can be salvaged or whether it’s a writeoff, Kristy said.

A silver lining is the fact that the family has been enveloped with support since the fire, with donations of baby clothes, household items and an online fundraiser through Go Fund Me. The family is facing huge bills for Luke’s future medical care and prescription medication, much of which is not covered under the Medical Services Plan. Certain shots to protect Luke against the flu cost $3,200 each and a minimum of four are required during flu season.

“Dustin and I have not cried at losing our house but what brings us to tears is the community support,” Kristy said.

This support, from family, friends, their employers, the church community and complete strangers, has helped Kristy overcome the isolation that she felt during the first few months of her maternity leave, when she could barely leave the house for fear that Luke’s condition makes him more susceptible to a respiratory infection from the common cold.

In one traumatic incident, Kristy took Luke to a coffee shop to meet other new moms. Someone coughed near Luke and she ended up rushing him to the emergency room that week because the cold he caught had grown so severe.

Any time the family has friends over, they have to quiz them on whether they or anyone in their family has been sick recently.

In the first few months of Luke’s diagnosis, Kristy joined Facebook support groups for parents of children with cystic fibrosis. While Kristy made incredible connections with other parents, she eventually stopped following the groups because it became too difficult to read posts about young children dying.

The couple has signed up for a two-year clinical trial for the drug Kalydeco which, if Luke passes the screening, would have the family heading to Seattle more than a dozen times over the next two years.

Until then, the family is just looking for a bit of normality while they search for a new home for Luke.

“All these people are banding together to help Luke, to help our entire family get back on our feet and help him be safe,” Kristy said, “and that means so much to us.”

kderosa@timescolonist.com