Winnipeg family celebrates return of daughter from hospital after 13-week stay

After spending 13 weeks in the hospital, the Howard family is happy to welcome home 8-year-old Willow just in time to have their Christmas celebration together.

“This one was the longest stint of her little life right now. It was trying for us but now that she’s home, that’s just the best thing to happen. That was the Christmas wish that we got and we’re going to keep it,” explained Jason Howard, parent and Christmas enthusiast.

“She’s doing really good. Her spirits are a lot better, she looks at the Christmas tree, she’s smiling a lot more now. Now that she’s realized she’s home that’s, again she’s doing really awesome.”

Jason Howard and his family go big in their decorations for Christmas.

“When I was growing up as a kid my mom always did it, and then I’ve always loved Christmas displays outside the house. When we moved to this house, we decided to keep on adding every year, just keep on getting it big because again, we love Christmas.”

Howard says they try and add something new to their yard every year, with lights and handmade decorations made by his wife, Anna.

“She handmade all the Grinch stuff, the Nutcracker she actually handmade. All the light stuff is what we purchased but everything else she’s pretty much handmade. My wife is very creative. Very creative.”

The family usually holds annual fundraisers for research for NGLY1 during Christmas and Halloween, but this year, Howard says they decided to simply put up the decorations for people to enjoy.

“I feel like with Christmas people have a lot of other spending to do and stuff like that. It’s more about just bringing awareness and people loving Christmas,” said Howard.

He says this display is special as Willow was able to take it in when they finally brought her home.

“When she came home, we came home at night so she saw it. You could tell her eyes lit up when she saw the Christmas. Now inside the house with all the decorations, as my wife will say ‘Christmas puke’ in the house – which I love to do, she loves all the lights and stuff.”

Willow is the only patient in Manitoba who has NGLY1, a rare genetic disorder that affects her mobility, verbal communication, and learning.

“Right now she’s supported by oxygen because when she gets sick, even with the basic cold she’ll end up in the PICU. Could be a week, again, just last month [was a stay of] three months,” explained Howard.

Now the entire family is back together, and Howard says everyone has gotten back a piece of them they’d been missing.

“Now my wife gets the cuddles that she’s been missing for the last three months. My son, loving seeing his sister here. He feels more complete now that she’s home and myself personally, my baby girl’s home and I have someone to watch football with now again.”

Howard says the family is looking forward to Christmas on Monday, when they’re planning to spend a beautiful day together.

“I like to be at home so we may go visit our in-laws or they might visit us, we haven’t completely decdied. It’s just going to be wake up, Santa’s going to bring the presents, open up the presents, have a nice Christmas breakfast and just enjoy the time at home because we’re on holidays for the week. We’re just gonna enjoy each other’s time.”