A Joy to be home

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This article was published 05/10/2017 (3064 days ago), so information in it may no longer be current.

Since she was born in April 2015, Joy Finnimore has gone to bed each night at the Winnipeg Children’s Hospital.

On Wednesday, the little girl with a reputation for living up to her name went home to Portage la Prairie and got to sleep in her own bed.

“We’re looking forward to finding our new normal,” mom Melanie Finnimore said during an interview at Ronald McDonald House while giving Joy one last push on the swing set there.

It’s been her home away from home since Joy was born with a life-threatening complication of a condition known as cystic hygroma.

The most common complication is disfigurement from large growths around the neck and chin. In many cases, doctors can remove the growths.

Not in Joy’s case.

Hundreds of micro-cysts inside her neck choked off her windpipe and enveloped her aorta. They were unstable and growing, squeezing critical parts.

The condition, even in its more benign form, is rare — about one in 5,000 births. With Joy’s complications, it’s probably about one in 10,000 to one in 16,000 births, Finnimore said in an earlier interview.

Now, after 30 months and four surgeries, she can safely go home. Joy still has a feeding tube, but is starting to eat on her own. She will require more surgeries — with the next one set for Oct. 30, on her trachea.

“We’re looking forward to her being able to vocalize,” Finnimore said.

The bright, bespectacled two-year-old with a huge smile has no problem communicating. She uses sign language and, developmentally, is where she is supposed to be for her age.

At home in Portage, her dad, friends and community members have stepped up to help, Finnimore said.

Saying goodbye to the hospital staff where Joy has spent her entire young life wasn’t easy, her mom said.

“It was very emotional. Literally, it’s her family. She’s adopted a lot of aunties and uncles,” Finnimore said, adding that it’s where she lived up to her name.

Cuddling the calm, sweet-natured child was medicine for stressed staff, at times.

“When someone was having a bad day, they’d say, ‘Do you mind if I have a moment of Joy?’”

The Finnimore family has brought a lot of joy to Ronald McDonald House, too, said Wendy Galagan, chief executive officer of Ronald McDonald House Charities Manitoba. The charity provides families with a place to stay while children are undergoing treatment at the Children’s Hospital.

“We’ve known Joy since birth. She’s an incredible little girl who’s made an impression on us,” Galagan said, adding Joy’s mom has been “an advocate and spokesperson for our mission.”

“She continues to express her gratitude and appreciation for all we’ve been able to provide her with during her journey,” Galagan said.

Finnimore said she’s grateful to the charity, where she set a record as the longest-staying guest at 1,007 days

Guests receive an estimated $200 worth of help a day in accommodation, meals, programming and parking, Galagan said, but you can’t put a price tag on the compassion of volunteers and staff.

“It’s an incredible journey we’ve been a part of with them,” Galagan said.

“I know we will continue to be a part of their journey. Joy’s health-care needs will continue for many years.”

carol.sanders@freepress.mb.ca