Last night in St. Louis, Taylor’s Tale helped make it possible to award one-year grants to four talented research teams from the University of Texas Southwestern at Dallas (led by Sandra Hofmann, MD, PhD, whose work we’ve funded for the past two years), Washington University in St. Louis, the University of Missouri and the National Institutes of Health.
Mom is back from San Diego; she arrived on the red eye this morning. I have many things to report from her journey out west and will do so in time. Tonight, though, I just want to share some reflections from her time with Daniel Kerner, who is nine years old and has late infantile NCL, and Daniel’s mother, Joanna. Together, Daniel and Taylor form the bookends of the historic clinical trial in Portland, OR. Daniel was number one; Taylor was the sixth and final participant. Joanna and my mom have talked with one another countless times across cyberspace and telephone wires, forever connected by their children’s at once great hope and great sacrifice that was their experience in Portland, but they had never met in person. Since the day I was first contacted by another family stricken by Batten disease, as ours is, I have struggled to put words to the relationship that is forged between us all, even if the road between us stretches thousands of miles, as in the case of the Kings and the Kerners. However, Joanna’s most recent CaringBridge journal post recounting the time she and Daniel spent with my mom described it beautifully, so I emailed Joanna and asked her if she would share her words with me. She said yes, so I’ll share them with you now:
“Meeting Sharon King, Taylor’s mom, for the first time was immediately comfortable and welcoming. There was no way that I would not bring Daniel to meet Sharon. We exchanged gifts for the kids; Taylor sent Daniel a UNC baseball cap signed by the Women’s Basketball coach Sylvia Hatchell, and Daniel gave Taylor his newly edited Braille book entitled Love. Someday, Daniel and Taylor will have an opportunity to meet in person. Until then, they will have a coast-to-coast friendship through their moms. There is a special bond the moms share that is on a level deeper than any peer friendships. We are woven together into a different cloth of life that creates a strong and compassionate quilt, assembled painfully through heartbreak and upheaval, grief and acceptance, strength and perseverance. A quilt, we hope, big and strong enough to smother the dragon and deliver our children back to their childhood dreams.”
As I write these words from my living room on the East Coast, Daniel is on the West Coast, probably sharing the company of his parents and his older brother and sister, perhaps eating dinner with them, no doubt making happy memories (because they, with the exception of our constant search for the cure, are the central purpose of every day we are given). Thousands of miles away, I am searching for answers, in the world out there and within my heart. I am fighting for Taylor. I am fighting for Daniel.
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.