We all need a little hope as we close out this incredibly unique year. 2020 brought a lot of pain and setbacks to our fight for a cure, but it did not squash our hope and determination to keep fighting for these innocent kids. This year also brought out a lot of love and support from friends, neighbors and complete strangers.

Hope is being able to see that there is light despite all of the darkness.

We live in a neighborhood in Kansas City that is known for its Christmas light displays. Limos, buses, and cars packed with families come from all over the city to drive through the neighborhood from Thanksgiving through Christmas. After receiving Charlie’s diagnosis in 2019, we realized that Christmas lights gave us a unique opportunity to reach an audience that we might not otherwise be able to reach. We ordered a custom sign that said, “Merry Christmas – Please Visit http://www.ACureForCharlie.org” and went all out on our lighting display. 

This year, with more time on our hands, we went even bigger with the display. Nate acquired a full set of plastic light-up reindeer and Santa – including a Rudolph with red blinking nose – and then spent weeks figuring out how to get them to fly. When they were airborne, he claimed it was the most engineering work he had done since college. One weekend he found a giant pair of light-up Candy Canes listed for sale online, and when the seller found out what they were being used for, she gave them to us for free, even delivering them to us. I ordered a newer sign for the yard that allows people to donate just by pulling up their camera. After days and days of planning and set up, the display was ready to be turned on, with fingers crossed that the rest of the neighborhood wouldn’t lose power. 

The lights officially went on over Thanksgiving weekend, and the impact was immediate. Our hearts were touched by strangers who drove by and showed us a true act of kindness. They were visiting from Denver and were not familiar with Charlie or Maxwell’s story but were moved and encouraged to act.

We have countless stories like this sweet family. Just a few days later we received an email from a KC mother who was moved to tears as she read about Charlie and SLC6A1. The number of supporters wanting to help Charlie, Maxwell and all SLC6A1 kids is truly overwhelming.

Thank you to everyone who continues supporting, praying, donating and working fearlessly for our kids in hope that they will soon live happy and healthy lives. You are the reason for our hope, you are the reason we see light through our darkest days.


SLC6A1 Gene

I am a mother of a beautiful boy with an SLC6A1 mutation and I am dedicated to finding the best treatment possible for my son.

0 Comments

Leave a Reply