'She just likes to prove everybody wrong': Manitoba girl with rare neck growth comes home
A Winnipeg hospital has been Joy's home since was born in April 2015 with cystic hygroma
After spending her first 2 ½ years of life in a hospital, Joy Finnimore is finally home in Portage la Prairie.
On Wednesday, the little girl who was born with a rare and life-threatening condition, slept in her own bed for the first time.
"It's pretty exciting, it's overwhelming, but it's nice to be able to start a new chapter in Joy's life," said Joy's mom, Melanie Finnimore.
A Winnipeg hospital has been Joy's home since she was born in April 2015 with cystic hygroma, a condition that causes abnormal growths around a baby's neck or head.
It's a rare condition and even more so in Joy's case, where hundreds of tiny cysts have wrapped around every major structure in her neck.
According to Finnimore, only one in 10,000 to 16,000 babies born with cystic hygroma have complications as serious as that.
"She's pretty much had a tumour from ear to ear that went over the neck region and into her chest," she said.
"It's also involved with her vascular, like the veins and the blood. It involved every major thing in the neck, hence why she has a [tracheostomy], because if it wasn't in, her airway would collapse and she would suffocate."
Joy has also had to use a feeding tube because the tumour swells around her tongue and makes it impossible for her to eat through her mouth.
She has already gone through five surgeries to reduce the size of the growth, which is why she hasn't been able to leave the Children's Hospital at the Health Sciences Centre for more than a few hours at a time — until now.
"It's still kind of surreal," said Finnimore, who has spent nearly as much time in Winnipeg as Joy, staying as close as possible to her daughter.
She eventually hopes to go back to work part time when Joy heads off to school in the coming years.
"Since routine has not ever really happened in her life, we'll try and get a little bit more of what a normal family life should be. We are just so happy now that we can start a life here in Portage," Finnimore said.
During those first 2 ½ years, Joy had been able to leave the hospital, but only briefly. She spent time with her mom at Ronald McDonald House, where Finnimore was living while in Winnipeg, and also travelled to Portage a handful of times on day trips.
With a series of successful surgeries under her belt and a new medication she started taking in February — which has reduced the tumour as much as 30 per cent — Joy was given the OK to go home and live a life like other children her age.
And now, after communicating through sign language since she was six-months old, Joy is learning to talk and to eat on her own, Finnimore said.
"In the beginning they told me that she would never eat by mouth, she would never drink, she would never talk, but she just likes to prove everybody wrong."
In addition to the care Joy has received at the hospital, Finnimore cites Ronald McDonald House as an invaluable service.
She brings joy to the world.- Melanie Finnimore
"It's a home for Joy, I always say that," she said.
Being able to spend time with the other kids there Joy develop the social skills of any typical two-year-old, Finnimore said.
"It really helped her developmentally be able to be pretty much on par with what normal kids her age are," she said.
"She loves to play in parks and with all her toys and with other children."
Finnimore called the staff at Ronald McDonald House an extended family to her and her family, helping them learn how to deal with Joy's condition. At the same time, the staff seem to have enjoyed being around the spunky little girl.
"She brings joy to the world...she lives up to her name," Finnimore said.
Joy will still need as many as 30 more surgeries before the tumour is gone, with the next one scheduled for later this month.
Finnimore knows that means the family will never be able to live too far from a hospital but she's glad to know Ronald McDonald House and the Children's Hospital will always be there to help.