My mom and dad first met Cindy and Doug Smith of Winnipeg, Canada at a world symposium for lysosomal storage diseases in Orlando; this was just months after Taylor was diagnosed with infantile NCL in July 2006. Being like-minded fighters fighting the same fight, they've stayed in touch ever since.
Fast-forward two and a half years to an evening in early July of this year. My mom had not made plans to attend the BDSRA conference - the annual meeting during which families of affected children get together to support one another and research grants are announced. On this evening, though, Mom had Winnipeg on the line. Doug Smith urged her to attend the conference, telling her that the work of Taylor's Tale had helped give hope to children like his son. Not long after that night, Mom boarded a plane for St. Louis, where she would witness the awarding of four more grants for INCL research. Another year of hope.
Just a few short weeks ago, Mom got another call from the Smiths. This time, Brandon had taken a sharp turn for the worse.
Brandon passed away in his parents' arms on Sunday, November 1. He was eight years old. When I found out that Wednesday, I cried in my office.
In spite of the miles that separate us, Brandon and his family feel like old friends. We share the same fight. And Brandon, like Taylor - like all of these kids - was a fighter. Batten disease is tragic; after the diagnosis, there's never an easy day. But Taylor always reminds me how to smile, just as Brandon did for his family and all those who knew him. In the words of his mom, Cindy, "He taught us to dance in the rain. Life is not waiting for the storm to pass. It's learning to dance in the rain."
Brandon fought till the very end, and I will, too. I fight in honor of his great courage and to bring hope to the children we can still save. We couldn't do it quickly enough for Brandon, but we're close. Let his story inspire all of us to keep dancing in the rain.
Click on the links below to read two beautiful articles about Brandon and his family's fight.
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