LUKE & ISAIAH
our Story
“Luke and Isaiah faced this horrible disease together, dying just months apart. They were so connected and bonded, they would even still act like brothers, beating each other up, tripping one another, laughing at each other.”
How does GM1 impact your family?
We lost Luke and his brother, Isaiah, four months apart in 2018. Not a day goes by that we don’t miss them or speak of them. They are dearly cherished.
GM1 stripped them of their abilities, accelerated aging, and caused pain. Despite this, Luke & Isaiah maintained a smile and shared their infectious personality, spreading love to everyone around them.
How did you feel when your child received a diagnosis of GM1?
It was bittersweet when we received the diagnosis of GM1. I finally received answers to what was affecting my son, but those answers came without any solutions. Luke and Isaiah faced this terrible disease together, dying just months apart. They remained connected and bonded, still acting like brothers—playing rough, tripping each other, and laughing together.
What do you wish people understood
more about rare diseases?
“No parent should have to outlive their child. No child should endure such harsh realities and fear an early death. Children deserve the chance to live full lives.“
