For many people, the holidays are a special time for making memories and spending quality time with friends and loved ones. For 29 year-old mother of three, Stephanie, these quality moments became all the more meaningful since she was diagnosed with ALS.

Stephanie’s ALS story

“I don’t want to die. I want to see my babies grow up.” These are the thoughts that ran through Stephanie’s head when she received her diagnosis in October 2017. As Stephanie, her husband and her three childrenan active mother of three children under the age of eight, Stephanie never imagined she would be diagnosed with ALS, giving her an estimated two to five years to live.

Stephanie’s symptoms began in 2016 with some cramping in her legs that she noticed particularly at night. After months of trying to remedy the discomfort on her own, she visited her doctor who sent her to a neurologist. Five months of testing later, Stephanie was “blindsided” by the words, “You have ALS.”

“After those words came out, I couldn’t hear anything else,” remembers Stephanie. “I broke down. I couldn’t understand what he was saying because I was sobbing hysterically. When the neurologist left the room, I just looked at my mother and my husband, and had a panic attack. All I kept thinking was that I don’t want my kids to not have me. When you’re a young parent, you don’t think your time is limited.”

Of all the things ALS takes, time is one of the most precious – but Stephanie is making the most of the time she has left. One example of how she maintains a sense of normalcy is by continuing to go to the park with her children. Her youngest son rides his bike while Stephanie rides a scooter that helps her with her physical mobility when she has to go longer distances.

“My five year-old says things like, ‘I want to go on the swings, but I know you can’t push me, Mommy,’” shares Stephanie. “My seven year-old understands that Mommy needs help walking, putting on her shoes and getting into the car. She’s constantly checking up on me because she knows I get tired and need help doing things. We haven’t talked to them about the future because no one knows what the future holds.”

Today, Stephanie is focusing on being the best mother she can be. Every morning before school and every afternoon when they come home, Stephanie is there. Together, they read books, play games, colour, and do arts and crafts. For Stephanie, it’s about the memories and the lessons she will leave behind. She’s truly not taking the gift of time for granted.

“It’s hard for a 29 year-old to admit to needing help,” she says. “Some days I’m scared to eat because I don’t want to choke. I’m scared of not being able to breathe. But I try to stay upbeat and take life day-by-day.”

Earlier this year, Stephanie and her family were fortunate enough to travel to Walt Disney World thanks to the kindness of friends and family who chipped in. The trip was something that brought them so much joy. “I woke up every morning feeling so grateful,” she says. “My children will get to remember being at Disney with their Mommy.”

This holiday season, Stephanie has one piece of advice to share: “A hero is not one that conquers all, but is someone who finds the strength to endure overwhelming obstacles. Live life to the fullest.”

ALS takes so much, but every gift made to ALS Canada from now until the end of the year will help people like Stephanie enjoy precious moments. With the generosity of donors, we can help ALS Canada continue to support those living with the disease in Ontario and fund more promising discoveries for a future without ALS .

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