Before delivering the bad news to his children, Matt Brown had to think hard about how to tell them he had a newly diagnosed disease that was progressing quickly, had no cure and would ultimately kill him. Brown started having muscle twitches in his upper arms in the fall of 2019. On March 4, 2022, he and his wife Catherine learned he had ALS, or amyotrophic lateral sclerosis, which destroys nerve cells in the brain and spinal cord and eventually leads to paralysis.
That "awful day" ended with the couple telling 12-year-old Colin and 15-year-old Jayson that their dad had a terminal illness. The diagnosis was confirmed after three months of unsuccessful intravenous immunoglobulin treatment, which involves administering antibodies directly into a patient's bloodstream from plasma donated by thousands of blood donors. "When we sat down to talk to them on that Friday night, I don't think they really knew what the gravity of ALS was," Brown said from London, Ont.
"We kept it very simple." Catherine Brown said she'd written a script to help the couple stick to their message. "We were really scared," she said.
"We did say that ALS eventually attacks all the muscles in the body, including the lungs. And if your lungs don't work you can't breathe anymore. We did allude to all these things but when you're young and you're being told heavy stuff that might not sink in right away.
" Experts say that while some well-meaning parents keep their serious or terminal illness a secret, kids shou.
