Remembering Landon

This week, the world lost another beautiful soul to the devastating disease of INAD.

Landon Caputo passed away snuggling in the arms of his mother this week when he was just six years old. And while we know Landon is at peace now, we can't help but grieve for his passing.

Grace sent Landon a St. Louis Cardinals Mickey Mouse for his collection.

Although we never got to meet Landon, we got to know him through his mom's Facebook posts. He was a little boy who loved Mickey Mouse, smiling and being with his family, including his big sister, Issy. He was so brave and courageous, just like all the kids who battle INAD. They never complain about the things life has taken from them. Instead, they smile and remind all of us to live each day to the fullest.

Since Landon is just a little younger than Grace, he was diagnosed with INAD around the same time. And we got to know his parents through a support group on Facebook. Even though we have never met in person, I consider Landon's mom, Ashley a close friend. There's just something about sharing a life experience like this that bonds people together, whether or not they ever have the chance to meet in person.

Landon sent Grace some Mickey pajamas for her birthday one year!

Since Grace and Landon were about the same age, they have sort of gone through the progression of INAD at the same time. That has given Ashley and I a chance to bounce ideas off each other, check in on one another and share when things get hard.

Ashley and I had been texting last week. She was looking in on Grace, asking us about how the trial was going. She shared that Landon had been having a rough time, and that they were spending his final few days together as a family. 

Grace also sent Landon a pirate Mickey Mouse for his collection.

We are heartbroken for Landon's family. Instead of learning to write his name and read books in kindergarten, Landon bravely fought against a ravishing disease every day of his life. Strong and courageous, Landon's life is reminder to all of us that life is always to be celebrated. 

And we will never stop trying to #BeatINAD for Landon, Grace and all the brave kids who fight against INAD with ever fiber of their being. We will continue to raise awareness and funding for research until one day no kid has to fight INAD anymore.

mlh