Learning to Dance in the Rain

Published: November 11, 2009  ~   0
By Laura Edwards
My mom and dad first met Cindy and Doug Smith of Winnipeg, Canada at a world symposium for lysosomal storage diseases in Orlando, 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, Nov. 1. He was 8 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’ll 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.

On the Highway

Published: February 19, 2009  ~   0
By Laura Edwards

This week, my mom is in San Diego for the Lysosomal Disease Network World Congress (Batten Disease is classified as a lysosomal storage disease). One of the presenters on the program is Sandra Hofmann, MD, PhD, whose infantile NCL project Taylor’s Tale has funded since mid-2007. Very few families attend this particular conference because it is so technical, but this is my mom’s second go-round, even though Taylor was diagnosed less than three years ago. That’s my mom – she won’t accept precedent, and she won’t miss a single opportunity to give kids like Taylor an edge. My mom and I joke that we stick out like sore thumbs at these conferences (I majored in English in college, and my mom majored in music), but we hold our own. We simply have to. We can’t offer anything in the lab, but what we can do is advocate for children with Batten disease – and all children with rare diseases – and understand enough of the research landscape to maximize our ability to support it with our fundraising and awareness efforts.

All of us – children like Taylor and families like mine and our friends and loved ones – are currently stuck in a car traveling down a single highway. We’ve been told what lies at the end of the highway by those who’ve gone before us – that this is a fatal disease and that the best we can do is provide comfort to those who suffer from it – and make as many happy memories – as much for us as for them – as we can. But I have a little bit of my mom in me, and I don’t like that itinerary. I don’t like the idea of a highway without exits and a car that travels at its own speed and doesn’t bother to tell me when it’s going to speed up or slow down.

I can’t have a new car, though – T’s genes are what they are. So the best I can do is keep my eyes open for an exit. I don’t know if there is one exit or if there are many, if they are marked or if we will have to rely more on our instincts. I don’t know if the exit will be created by enzyme replacement therapy, or gene therapy, or stem cell transplantation or something else – or if there will be more than one exit – but I know that something’s out there, and that we’re close, much closer than when I first got shoved into the car by invisible hands that day in the summer of ’06. See, though I may spend each and every day working toward a greater understanding of the science, I’m still a creative, and I don’t deal in black and white. I don’t deal in absolutes, and I like to throw a little color in there whenever I can. It may take a little imagination to help find the exit(s), but maybe that’s my role – I’ll leave the miracle-making to the ones in the lab. I don’t like the route that was chosen for us. And I’m not backing down.