'She defies the odds': Manitoba toddler in hospital since birth is ready to move home

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'She defies the odds': Manitoba toddler in hospital since birth is ready to move home

'She defies the odds': Manitoba toddler in hospital since birth is ready to move home

Joy Finnimore just celebrated her second birthday but she is ready for another milestone: moving home to Portage La Prairie, Man.

The busy, bubbly toddler was diagnosed with a rare birth defect in the womb and has lived at Winnipeg's Children's Hospital since she was born. 

"She defies the odds every day," her mother, Melanie Finnimore, told CBC News.

"I believe in miracles and she is my little miracle."

Joy has cystic hygroma, an abnormal growth or congenital malformation of the lymphatic system that generally forms in the neck.

The condition, which affects one out every of 5,000 births, compromises Joy's airway. A tracheotomy tube allows her to breathe.

Over the last two years, she has undergone two surgeries which have reduced the size of the tumor.

Trying experimental treatment

The toddler is also one of roughly 30 patients in Canada trying an experimental treatment out of Toronto. She is receiving daily doses of sirolimus, a growth inhibitor, traditionally used to prevent transplant rejections. 

"It's already exceeded my expectations," Finnimore said, adding she believes it's reduced the size of the growth by about 30 per cent.

While doctors say it's still too early to tell if the treatment is a success, Finnimore said the toddler is seeing other improvements. Joy's family was told she would never be able to eat or drink on her own, but the reduction in the mass means she has been able to pass a swallow test and enjoys drinks and solid food regularly.

Challenge finding overnight nurses

After more than two years in hopsital, she is finally cleared to go home, but the obstacle now is finding nurses to care for her at the family's Portage La Prairie home overnight. 

"It's very, very challenging," Finnimore said. "It's a smaller community, it's a later shift, there have been very few applicants who have been interested in."

Joy requires monitoring around the clock because if her tracheotomy tube becomes dislodged she could stop breathing and die. 

Until the position is filled, Finnimore is staying at Ronald McDonald House in Winnipeg, near the Children's Hospital. The single mother has been on unpaid leave from her job as a psychiatric nursing assistant for two years to be close to her daughter. 

She says the staff and other families of sick children living there have become like family. 

"In the beginning of this journey you could never have foreseen the twists and turns that have happened," she said. "With home lurking in our future, I'm very excited."

Joy has already had a few tastes of freedom. Last week, she visited a playground for the very first time.

"It was very exciting," she said. "She didn't like the feeling of sand at first, she didn't like the feeling of grass at first and she was kind of walking cautiously ... but within an hour and a half she was getting the hang of things."

The two-year-old, who cannot speak because her airway is compromised, is also learning sign language.