I am Tammy Allred
a family member in a familial ALS family
At 25 years old, she was outgoing, funny, a ray-of-sunshine personality.
Kylie was the baby of our family. At 25 years old, she was outgoing, funny, a ray-of-sunshine personality; I’ve looked, and I can’t find a picture of her not smiling. One of her biggest concerns was making sure everyone else around her was happy. If she sensed that someone was sad or struggling, she would go up to them and say, “Do you need a hug?” It was practically her motto.
Up until 2019, she was very active, and loved working out and going hiking. Her real passion, though, was doing hair and makeup. She was in the process of looking into enrolling in cosmetology school when she started feeling a strange pain in her left ankle.
For nearly a year, we didn’t know what was going on. She went to multiple specialists, underwent so many tests — MRIs, spinal taps, muscle and nerve biopsies, IV treatments in case it was an autoimmune disorder. All this time her disease was progressing. By the time we went to the Mayo Clinic in Arizona, her whole left leg was compromised, and she could no longer lift it to move it. She had lost 20 pounds in a month and a half.
At Mayo, they rolled out a few more tests. On May 14, 2020, they came to the conclusion that the only diagnosis left was ALS. It was a total shock for all of us.
