Counting Batten Disease in Years

When I was a kid, Christmas and birthdays and the first day of summer felt different from other days.

But July 24 is just a day. It’s different for me only because it counts the years; it marks the passage of time.

It’s been nine years since the first time July 24 – the day of my sister’s infantile Batten disease diagnosis –  mattered to me. A lot has happened since then; I remember how scared I was in the beginning, when I thought we had a chance to save Taylor’s life. Now I have to live with the knowledge that I’ll lose my sister regardless of what I do.

Taylor shortly after the diagnosis, in 2006

The summer after the diagnosis, Mom and I flew to Rochester, New York and attended our first Batten Disease Support and Research Association conference. The hardest part was seeing all those sick kids – one hundred crystal balls. The wheelchairs and feeding tubes and vacant eyes were almost too much to bear while my sister played tag on the playground and read chapter books and sang songs back home in Charlotte.

That weekend, we met Dr. Sandy Hofmann, a scientist whose infantile Batten disease research we funded for four years. Like other desperate family members, Mom and I asked Sandy how long she thought it would take to develop a treatment.

“Fifteen years,” she said. I remember thinking 15 years felt like an eternity. We’d raised a lot of money in a matter of months – or at least a lot more than most. Couldn’t that buy answers more quickly?

Today, Taylor’s Tale – the organization my sister inspired – has more momentum than ever before. We have no physical office, no paid staff and a small volunteer team, but we’ve been the catalyst for historic rare disease legislation at the state level and supported important legislation at the federal level. We’ve become internationally known in the rare disease community for our work on behalf of millions like Taylor. We’ve funded research at top institutions in the U.S. and Europe. And I think we’ll beat Sandy’s 15-year prediction. Dr. Steve Gray, a precocious investigator at the University of North Carolina, developed a gene therapy treatment for infantile Batten disease that’s already working in the lab. The goal now is to fine-tune the treatment and perfect it for children like Taylor. With adequate funding, Steve’s team – and Taylor’s Tale – will reach the finish line a couple of years ahead of schedule.

The sad part, for me, is that none of this momentum is coming in time for Taylor. Mom said recently that if my sister had been born five or six years later, things could have been different.

I wrote a book in nine months, but I couldn’t save my sister in nine years.

And for me, that’s the real bitch of July 24, no matter how many kids we save down the road.

Taylor in 2015