Young Ottawa mother of three diagnosed with ALS hopes for Disney trip to make memories
Joanne Schnurr, CTV Ottawa
Published Monday, November 13, 2017 5:48PM EST
Last Updated Monday, November 13, 2017 7:11PM EST
A young mother of three has been dealt a devastating blow. The 28-year-old has been diagnosed with ALS or Amyotrophic Lateral Sclerosis. Now friends and family, even complete strangers, are rallying to fulfill her dream: to take her kids to Disney while she still can.
For Stephanie Christiansen, this trip isn't about a getaway, a break from the winter blahs. Instead, this is about building memories with her three young kids before this debilitating disease robs her of that chance.
“What are you guys doing, coloring?” says Stephanie Christiansen, as she walks slowly into the family room, pushing her walker, where her husband Nick Hall is coloring with their three children, 6-year-old Riley, 6-year-old Caden and 4-year-old Hunter.
This is all about making different memories now for the Hall family. Coloring has replaced running. It's been a quick and painful transition.
“I went from being able to run and chase my kids around the yard and playing soccer with my kids to being in a wheelchair and having a walker,” says Christiansen.
It started about a year and a half ago when she started experiencing cramping in her arms and legs. Dozens of tests and specialists’ visits followed. Then, 3 weeks ago, Stephanie Christiansen got the worst imaginable news: that she has ALS.
“They can't tell me if I have a year, 5 years or 10 years.”
ALS or Lou Gehrig's disease is a motor neuron disease that gradually paralyzes people. It has no cure. According to ALS Canda, “the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow and eventually breathe.
It usually strikes people much later in life.
Dr. Ari Breiner is a neurologist at the Ottawa Hospital and says there are between 100 and 150 people in the Ottawa are currently diagnosed with ALS.
“Certainly it's devastating for anyone to be given a diagnosis of ALS,” says Dr. Breiner, “but especially in the young patients when they’re in a stage in their life when they are starting a family, starting a career.”
The Hall family has moved in with Stephanie's parents.
“It was actually the day of diagnosis,” explains Kari Christiansen, Stephanie’s mother, “It was October 17th and she didn't want to go home, she just didn't want to go home.”
And now that circle of support is working to give Stephanie her dream: to go to Disney with her kids and build memories.
“Taking her to Disney, making her dream come true is something really close to our hearts,” says Christiansen’s sister-in-law Florence Hall.
Hall and neighbor Jodi Ferguson have started a Go Fund Me page that will also help with medications and equipment she will need as disease progresses.
The kids are too young to understand what's happening.
“I can't promise my 7-year-old daughter that I will walk her down the aisle,” says a tearful Christiansen, as she reaches for little Hunter and asks for a kiss.
For now, for this moment, they are making every minute count.