Mutiat and a caregiver sharing a tender moment at home.

Mutiat and Idris met on a street in Lagos, Nigeria 21 years ago and became fast friends. Their friendship was kindled for almost a decade before they realized they were in love and wanted to build a life together. “She makes me a better person,” says Idris. “She motivated me to go back to school. She’s my best friend.”

The couple were married in 2009 on Idris’ birthday, after which they moved to the United States and had three children. Some time after her last birth, Mutiat started to experience weakness in her muscles. Later the next year, she began having slurred speech and uncontrollable laughing. In January 2018, after a fall at the US-Canada border that caused her to be rushed to the emergency room, Mutiat, at the age of only 36, was diagnosed with ALS.

Her diagnosis hit the family hard. They now live in Ontario, and as her disease has progressed, Mutiat has found she has not been able to care for her children the way she had envisioned. Idris has become the family’s primary caregiver and he worries about the future. He’s thankful for the support from the ALS community and says if not for its assistance, life would be considerably harder than it already is for the family of five.

“As an unemployed individual, if we did not have ALS Canada’s support in terms of equipment for my wife, life would be miserable,” Idris says. “ALS Canada really comforted us majorly by providing useful equipment for my wife’s everyday routine activities and also this equipment lessens my daily worries and burden.”

For Mutiat, the warmth of the people around her, as well as the accessibility to the ALS Canada Equipment Program, have helped her tremendously. “I can never forget the warmth and support from my Community Lead, Joanna, toward my family, especially the connection she has made with our daughter. My husband and three kids are my everyday joy and they are very crucial to my ALS journey. They are my pillars and the strengths of my wellbeing; without them I don’t know what would have happened to me since my diagnosis.”

Mutiat studied marketing in university and was a businesswoman prior to her diagnosis. “Regrettably after the ALS diagnosis I lost focus in all my passions,” she says. “My present condition has been progressing and debilitating my passions in many levels of my life. At only 39 years of age, my life has already been dramatically shortened.”

She draws strength from her husband and children, as well as from religion – she faithfully reads the Quran – and from words of comfort from family back home in Nigeria. Idris helps her by saying soft words at the beginning of every day, with mouth care and positioning in bed, as well as bathing, food preparation and helping Mutiat to move around.

For Idris and Mutiat, the time is now for love, hope and kindness. Even as they face immeasurable hardships, Mutiat and Idris rely on love to carry them through the adversity they encounter on a daily basis. “Anyone who lives with ALS needs love, needs caring,” says Mutiat’s husband, Idris. “I love her…I’m here for her, every day.” Despite Mutiat’s ALS diagnosis and how quickly the disease has impacted her ability to speak and move, Idris says Mutiat reminds him to focus on the things they have to be grateful for, in particular their three children. “They’ve taught me a lot about love, about caring, about the blessing of life,” Idris says.

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