We've started a team in honor of our daughter, Gabriela or "Gg", who has a congenital (she was born with it) myopathy (muscle disease), which is otherwise undiagnosed. Doctors and researchers love her, including many amazing folks at Children's National Medical Center, Johns Hopkins and NIH, because she seems to represent a type of myopathy that has not yet been well-studied or documented. For us, that just means we aren't sure what's to come. But we do know how lucky we are--spending time in children's hospitals will do that to you. Meanwhile and more importantly, Gabriela is a brilliant and beautiful little girl, who loves to dance and twirl, create costumes for her stuffed animals, hug her dog, and tell jokes with her brother. She wants to be an artist, and we expect she will be. She's also strong-willed, strong-hearted, and truly brave, having put up with surgeries, casting and hundreds of doctor's visits. Really, she's much stronger than the rest of us. She has taught us many things, but mostly that being slow isn't a bad thing (you miss a lot when you go too fast).
Still, it's not easy for a 6 year-old who can't run around and jump and climb like other kids. Making it from the classroom to the cafeteria to the media center and back is a really long walk for her, and can be exhausting. Stairs are a nightmare.
But there is a lot of new research that's uncovering some of the mysteries of muscle disease, including whatever type Gg has, and there a lot of great efforts to make things easier for those who don't count gravity among their friends.
We hope you will consider supporting us--if you want to join our team and run/walk with us email me directly at firstname.lastname@example.org race is September 14th in Boston-- or donate a few dollars if you can. Thanks, and have a great 2014!