You know those things you’ve been meaning to do? The ones that pile up, and catch your eye from time to time, before retreating from awareness, anew, until they crop up again days or weeks later?
For me some of these reside in my email inbox: a link to a book or music that someone thought I’d like, a TED Talk, an enthusiastic idea for a trip or an adventure, a film clip or video….When I don’t check these out right when they’ve been suggested, it’s often because I feel like I don’t have the time right then to devote my undivided attention, to give them their due, and to really let them course through me and inspire.
Today life conspired to give me an afternoon at home alone. And I opened the Inbox of Good Intentions. And I clicked on a link Ivana sent me back in early November of last year.
“The Race for Brineura” will bring you to tears. Again and again. Some of unfathomable sadness, and then others of boundless hope and possibility. Oh, and there’s also a gong in it!
Brineura is central to Maya’s life, as are so many of the incredible people featured in the film, from the doctors and staff at Nationwide Children’s Hospital in Columbus, Margie Frazier of BDSRA, the VanHoutan Family (who shed light for the James Family in the early days of the darkness they were confronting) and the brilliant devoted team at BioMarin who simply don’t know “quit”.
Many of you have asked Ivana or me about how Maya’s doing. This comes straight from Maya’s dad Beau’s blog entry A #FightingforMaya Update: What if You Had To? from a couple days ago:
"The question I receive most often is "How is Maya?" It’s a tough question to answer, but she is doing well. Without treatment, we believe that Maya's gains would be non-existent and her progression would be far worse. Although we don't have a cure, we do feel that we have bought more time. Maya works very hard every day to improve her walking and balance. She can't walk independently and depends on a wheelchair to cover long distances. However, she shows such conviction and drive to regain the ability to stand and walk. It is inspiring."
This July, Ivana, Liam and I will volunteer at the BDSRA Family Conference that so many of you have helped support this past year. There will be Batten families there who would not have been able to attend were it not for the support you’ve given. We’re looking forward to meeting these families, and the people who devote themselves to marching ever closer toward a cure for Batten’s Disease.