Early this morning, I learned of the death of Jasper Duinstra in the Netherlands. When I saw the news on Facebook, my eyes misted and my legs went numb and my heart caught in my throat. But I’m supposed to be strong, so I wiped my eyes and shook out my legs and swallowed the knot, and I stood up at my desk and walked to a meeting.
Jasper’s family is Dutch but briefly lived in the U.S., where they formed fast friendships with other families fighting Batten disease. Jasper’s parents, Bou and Pip, believed in approaching the challenges of Batten disease in the same spirit as their young son’s approach to life – a spirit of enthusiasm and commitment. They established a fund, Jasper Against Batten, to support potentially lifesaving research.
Then, Bou introduced my mother to Steve Gray.
In November 2011, Mom traveled to Bethesda, Maryland, for a new scientific workshop put together and sponsored by families fighting infantile and late infantile Batten disease. The usual suspects from past scientific meetings and BDSRA conferences presented, but when Mom called me the night she returned home to Charlotte, she couldn’t stop talking about a junior investigator from a lab just two hours up the road, at the UNC Gene Therapy Center.
Steve Gray was brand new to Batten disease but had gotten impressive results for another rare childhood disease called giant axonal neuropathy, or GAN. Bou had invited Steve to the workshop to show the Batten disease community what he could do.
I’ve never talked to Bou about why he brought Steve to that meeting, but I’m glad he did.
The Duinstras didn’t remain stateside for long, yet they left an indelible mark. And when I think about the legacy my sister will leave, I think about kids like Jasper, too – kids whose bright lights have already been extinguished by Batten disease. Jasper might be gone, but I can still see his blond mop and bright eyes and smiling cheeks. I can still feel his family’s fighting spirit and see the results of the important work they helped launch.
That work can’t help Jasper, though. It won’t help my sister. We keep losing kids. And some days, like today, it’s difficult to be strong. But we WILL cure this disease.
We need to do it now.