This is my son Frank. Frank was my first and deeply longed-for child. He was born in 2014 and, during his short life, became known throughout Sweden through the media. My favorite football team wore specially designed jerseys to raise awareness about the disease, and his story was shared across various media outlets, drawing significant attention to EB. The public called Frank "Zuperfrank," but to me, he was simply my little "Frallebulle." Fralla and bulle are types of bread in Sweden, and the name is just a sweet little play on words.

Frank died in my arms four months later, at the beginning of 2015, tired after his struggle and completely wrapped in his tiny little bandages. Thanks to Frank, many people around me have made life-changing decisions for the better and have thanked him for that. Children have been named after him, and I have made lifelong friends among the healthcare staff who cared for him.

I have so much to thank Frank for — he changed my life for the better because, after his death, I was forced to make active choices to avoid being crushed by grief and the traumatic memories of what he and I went through.

The sorrow after losing him has been immense, but today I have a beautiful life with Frank's little sister Flora, my husband, and a meaningful job that I enjoy. I often say, "Life didn't turn out the way I dreamed, but it turned out really well anyway."

Even now, I receive messages from devastated parents who googled the disease and found articles about Frank after recently had a child born with EB, and I have the opportunity to support them through the worst trial of their lives. There is something beautiful in being able to help others.