ALS took the love of her life in September 2017, but Debbie Caswell’s love for her husband Jamie is still the light that guides her.

Man living with ALS and bride on their wedding dayThis June Awareness Month marks their first wedding anniversary. At the time of the ceremony, Jamie had already lost the ability to eat, speak, and breathe without the help of a breathing assist (BiPAP) machine. His vows were pre-programmed on a communication tablet so when it was his turn to speak, all he had to do was push a button to play the recording. Once the vows were pronounced, Debbie was able to take his mask off and give him a kiss on the lips. “I was so proud to be his wife and so happy to become a part of his family,” she says. “I told him a few weeks before he passed that he was my ‘forever husband’ and I thanked him for coming into my life, for loving me, and for giving me everything I could have ever dreamed of in a partner.”

Debbie and Jamie first met in 2008 through Scouts Canada where they were both active volunteers and in Debbie’s words, “avid Scouters.” They shared a zest for life, a love of nature, and a desire to share that spirit of adventure with young kids. They went on camping trips, travelled to faraway places, and pushed limits. Husband and wife posing with Scouts gearCelebrating their 50th birthdays, tandem skydiving was all part of the thrill. Even after Jamie was diagnosed with ALS, he continued to do Scouting and scratch items off his bucket list for as long as he was physically able. He travelled with Debbie in 2016 to a Scout Jamboree in Finland where they camped among 17,000 youth from all over the world. In March 2017 when Jamie was confined to a wheelchair, he and Debbie rode in a helicopter over the volcanoes on Big Island in Hawaii.

Debbie says that sustaining love and being there to care for Jamie throughout his illness was easy. Maintaining hope was harder. It was Jamie’s courage and persistence to live the rest of his life the best he could that helped Debbie find hope. “He was always an optimist,” she says. “He adopted the idea that he would be the first one cured of ALS and I adopted the idea too even when his children saw that wasn’t going to happen. However, it all happened so quickly. I was hoping for five years and we got barely two.”

Family posing together at the WALK for ALSToday, Debbie wants to honour Jamie and all those who are touched by ALS. “The fight is not over just because his fight is over,” she says. Since Jamie’s diagnosis in 2016, she has participated in seven fundraising events for ALS Canada including WALKs for ALS in Belleville, Scarborough and Port Perry, fundraising at her wedding and at Jamie’s funeral, the Hike for ALS in Vaughan, and a Polar Bear Dip in Newcastle.

“No one should have to bear the burden of this horrendous disease,” Debbie says. Watching a loved one become trapped in his own body, struggling to clear his lungs and throat many times a day and night for months, like Debbie did near the end of Jamie’s life, she feels compelled to act. “I want to try to walk in Jamie’s footsteps, to try to make a difference in the lives of others like he always did. I want to see a cure for this deadly disease, so I will help in whatever way I can,” she says.

It’s the love you gave that ALS can’t take away. Please pass it on through a gift to support the search for a cure.

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