Lyon Hallin
February 18, 2022
September 18, 2023

From Lyon’s family:

Lyon was such a warrior. His laugh was the most beautiful thing we could hear. Lyon had the most beautiful eyes I had ever seen, eyelashes that were so long. His scent, his presence will always live within me. He gave our family so much love and closeness. He was so easy to love. He made all those around him love him. Even though Lyon couldn’t communicate with his surroundings, we understood him. We found a way to understand him. Lyon loved having his big sister Belle by his side. You could see how strongly he felt her presence. Belle made Lyon laugh like no one else could. Lyon taught me as a mother that a mother’s love for her child is invincible. Even though our days were spent a lot in hospital, we still got to be a family. Lyon and I learned to find the beauty in our everyday life. Lyon had a serious variant, he battled extreme epileptic seizures and horrible treatments but he still found peace on my chest always. Lyon will always be our superhero.

His last five months he got 4 pneumonias and a blood poisoning, he underwent 6 antibiotic courses in just under half a year, it was too much for him. After the 7 bouts of pneumonia in his life, his little body gave up. Lyon fell asleep peacefully at home in our bed between me and Marcus. He died with a smile on his face. Now he is free, he can run and play. He swings among the clouds like Spider-Man. He is free of Kif1A.

I hope at some point in the future we can find a cure. More families should not have to go through the loss of their child. I will never stop fighting for Lyon and the other children. We must never forget how beautiful our children are despite their difficulties. ❤️