Friends and Supporters,
The story today is about a handsome young man by the name of Remy from Florida. I got to meet Remy and his parents, Brian and Bailey this past fall and it was pure coincidence. However, someone I respect greatly told me recently that coincidences are just God’s way of remaining anonymous.
I was at a conference for work in South Carolina for a couple of days. While conferences are great for learning, what I typically find the most valuable is the personal and professional connections that are made. This conference was no exception. After a group dinner, we went back to the hotel. Before I headed to my room for the night, I stopped by the hotel restaurant and got into a conversation with a group of people, none of whom I knew very well. After a couple changes of topics, Brian and I got into a conversation that took us to a common place and common struggle. We discovered we both had children with rare diseases. All of the sudden, I knew one of those people well; I knew the emotions he was going through and the struggles of his family.
He shared that his son, Remy, who is now 9 months old, had been diagnosed with Williams Syndrome. Williams Syndrome is associated with a few different congenital heart conditions, and he shows a few. Today, they are all stable and therefore, no need for intervention, but this will have to continually be monitored. The other impacts of Williams Syndrome are wide ranging with high variability and where Remy will be in that variability is unknown for now.
Remy’s biggest challenge is his development right now. He works really hard and has therapy four days a week. In addition, he has constant world class in-home care from his Bailey. You’ve heard a common theme throughout these stories we’ve told and that is these kids are hard workers. Most are doing therapy more often than they are not and working hard to hit milestones that we take for granted in children without rare diseases.
Fortunately, it wasn’t only Brian at the conference. Both Remy and Bailey were there, and I got to meet both. I even got to hold and feed Remy, which was a treasure. I got to share my wisdom of almost two years that we had on this rare disease journey and hopefully help Brian and Bailey in their journey with Remy. I encouraged them to take things day by day and realize that even though it feels overwhelming, they are doing a great job. We all need encouragement when it feels like there is so much to do and you feel like you could always be doing more.
Brian and Bailey hope that Remy has fun every day. They hope that they provide him with the opportunity to impact others as much as he has impacted them. Lastly, they hope he never loses his gift of brightening others’ days with his smile. And about that smile… recently, Remy is really starting to show his personality to everyone he meets!
Brian and Bailey closed with the following thoughts. “Remy has taught us so much. Our love has grown exponentially, and our prioritization of the moment is so much better; Remy teaches us that what we have is all we need.”
I’ve got one more personal thing that I’d like to highlight about Remy. Look at his hair. I, for one, am jealous!
Also, please consider donating to the Williams Syndrome foundation at the following link: https://www.williams-syndrome.org/donate
With love,
Matt and Courtney