Kelly Anne Denton is still getting a feel for how nice it is to be back home with her family in Riverview.

But it was a long road. After years of muscle degeneration and 14 months in the hospital, Denton was diagnosed with myosin storage myopathy, a rare neurological disease.

She needs an electric wheelchair and a home-care worker, but at least she is home.

"It is surreal, I still kind of look for the cab every once in a while to take me back to the hospital, but it's amazing to be home with the kids and the husband and not be staring at the same four walls," she said.

Denton said she could have come home months ago, but couldn't afford the renovations needed to make her home wheelchair accessible.

She said after she was denied funding from the Department of Social Development, she and her family turned to the community and crowd funding.

"We did a lot of fundraising that met a lot of our needs, but us, we've easily spent $30,000 just on getting home and now the costs continue," she said.

Rachel Denton

Rachel Denton hopes to never eat takeout again after living at home while her mother was in the hospital for 14 months. (CBC)

Denton needed to expand doorways and rearrange a bathroom, arrange physiotherapy treatments, work out a home-care schedule and a reasonable bill.

She said she appealed twice to the Department of Social Development to get the cost for home care down $426 a month.

"It's still a hefty bill to pay each month, but it's doable," she said.

Missed her presence

The 42-year-old returned home last week, and her children are excited. Tristan Denton is celebrating his 18th birthday with his mother at home and relieved she's back. 

"I felt very good and ... it's less stressful," he said.

What he missed the most was, "being able to see mom all the time." And her tacos.

Nine-year-old Rachel Denton shared a similar sentiment. She's thrilled her mother is living at home again and her cooking is obviously appreciated.

"I can't handle any more takeout for a lifetime," she said.

While Denton was in the hospital, her husband, Christian Denton, worked full time as a teacher and held down the fort at home. 

Tristan Denton, Kelly Anne Denton

Tristan Denton hugs his mother, Kelly Anne Denton. He said the thing he missed the most was,"being able to see Mom all the time,” and her tacos. (CBC)

Now life is returning to what Denton describes as "the new normal."

She travels around the city using Wheels on Wheels, a transportation service for people who use wheelchairs or White Cab's all-access vehicle.  

Denton would like to have a van that would accommodate her wheelchair, but at the moment she said it is too expensive.

"Especially with my family all in Nova Scotia, I don't want to believe that I'm not going to go to Nova Scotia and see my family again," she said.

"But hopefully, down the road it will be something we can do."

Grateful to medical team

Denton credits her return home to a loving and supportive family and group of friends, and a team of doctors and nurses at the Dr. Georges-L.-Dumont University Hospital Centre that seemed to truly care about figuring out what was wrong with her. 

She also said local businesses and organizations donated goods and money, lightening some of her family's financial burden.

If there is one piece of advice Denton has for anyone in her situation it is to speak up.

"You have to be an advocate for yourself. Don't take the first answer that comes to you."