This Rare Disease Day felt especially meaningful for our family. 

Recently we were invited to attend an official City Council meeting in the City of Rowlett, where Mayor Jeff Winget read a proclamation formally recognizing Rare Disease Day. To stand in that room — representing Marley and the broader rare disease community — was both humbling and deeply emotional. 
 

Rare diseases are often called “rare,” but together they impact an estimated 25–30 million Americans. Nearly 90% of rare diseases still have no FDA-approved treatment. Families living this reality know all too well the long diagnostic journeys, the uncertainty, and the constant hope for progress. This proclamation acknowledged those challenges and, just as importantly, the people living them every day. 

 

For our family, this moment was about more than recognition. It was about visibility. It was about knowing that our city sees families like ours and chooses to stand with us. That kind of support matters — especially on the days when the road feels long. 

 

Adding a bit of joy to the evening, Maddox proudly stepped into the role of official family photographer. He documented the proclamation presentation thoroughly — and by thoroughly, we mean from just about every possible angle. We now have a generous collection of photos that will forever remind us of this night (and make us smile every time we scroll through them). 

 

As we reflect on Rare Disease Day 2026, our hearts are full. There is still so much work to be done — more awareness to raise, more research to fund, and more treatments to fight for — but moments like this remind us that progress is happening in ways both big and small. 

 

To the City of Rowlett, Mayor Winget, and the City Council: thank you for honoring the rare disease community and for recognizing families like ours. Being seen matters. Being supported matters. And we will carry this moment with us as we continue advocating for Marley and so many others walking similar paths. 

 

With gratitude and hope, 

Marley’s family