I really love Brittany. I get to watch her every Tuesday. She has NBIA, a rare genetic disorder. In only a few short years, she went from a normal child to one that is fed through a feeding tube, can't walk or talk. I have learned how to feed her, drive her wheelchair (haven't crashed yet), give her breathing treatments and in an emergency, give her oxygen. She even has her own elevator. She is a beautiful 15 year old girl who loves the Jonas Brothers (this week I found all of their music videos on YouTube, and we watched each one while I feed her).
She thought it was really funny when she accidentally knocked off her feeding tube and it went zipping around spraying us with her formula. And she laughed even louder when I didn't mix up her pills enough in her tube and it clogged the whole thing. I was there holding her syringe full of formula calling out to one of her parents (who had just got home from a walk and were upstairs getting dressed). I said loudly, "Sandy?" "Rich?" "Anyone hear me?" Help?! Brittany started giggling. I then shushed her and said I was going to get in trouble. She laughed more. After no answer, I ended up having to hold the full syringe while maneuvering her electric wheelchair to the base of the stairs in hopes of getting her parents attention. She laughed the whole time...even while I bumped her a few times in the process.
It has given me pause seeing this little girl with so much joy! She can't speak but yet she communicates. She can't walk, but through her loving parents, is able to see the world. She depends on help 24-7 and she gives those that serve her, so much.
I have a tendency to rush through life. When I am with Brittany, my life slows for a moment and I am reminded to hush the rush. I look forward to my time with Brittany.
Please make a donation to the Boston For Brittany NBIA Fundraiser.
Racing to Find a Cure
