Friends and Supporters,
Today, we are going to tell you the story of Max from Florida. I was connected to Max and his mom, Helena, through a friend I went to college with. We’ve never met Max or Helena in person, but that doesn’t mean they haven’t inspired us by their story. The unconditional love and support Max’s parents show him is unmatched. Also, have you seen a sweeter smile than Max’s?
Max is a 3-year-old that has been diagnosed with a rare genetic disease known as TBCD. TBCD prevents the body from creating enough myelin, so his entire nervous system is affected. He’s mostly non-speaking and his whole body is floppy and soft, so he can’t sit, stand, or walk independently. Nonetheless, Max lives an active, happy, fun life and is full of personality and laughter.
Max’s biggest challenge is getting sick. Even a little cold is a big deal for him. Keeping him healthy without depriving him of a normal social life at school is challenging. He misses nearly as much school as he attends because he’s always picking something up.
I asked Helena how having a child with a rare disease has changed her life. She described the spectrum of humanity and how people treat you and your child with a rare disease. Fortunately, the good heavily outweighs the bad, which gives her a lot of faith in us as a species! She described to me the community they’ve found and the incredible people they would have never met that she is always thankful for. Max has changed her philosophy on a lot of things. She has always been a little tightly wound, and he’s shown her how to be present and authentic and just enjoy things without overthinking.
Max has no agenda, no concept of dishonesty, and no anger. He’s just pure love. Max is Helena’s role model, and she is constantly learning how to be a better person from him. Max also has recently become a big brother and he is doing an AMAZING job in his new role! He is so happy to share his toys and love with his baby sister in a way his parents really didn’t expect to see right away from a three-year-old. He’s so empathetic and sweet with her. Max’s parents’ dream for Max is for him to have a happy life and to be able to do whatever he wants.
I hope you will consider supporting Max and his family. You can donate to the TBCD Foundation at www.TBCDFoundation.org. The TBCD Foundation is dedicated to building community, raising awareness, and funding medical research for TBCD. They are currently helping to fund the ongoing research at Bradbury Lab at Nationwide Children’s Hospital.
With love,
Matt and Courtney
