These children suffer from countless afflictions and rarely live past their early teens. They have no hair on their bodies, are very pale and fragile, have larger heads, bulging eyes and beaked noses. In other words, unlike most of us, these children have been dealt a very, very difficult hand. Not only do they suffer from this cruel disease and it's difficult treatment, but they look extremely different from the average child, which makes them subject to stares and cruel words from those who don't understand.
During this show, the mom of one of these little girls (and I think it was Lindsay's mom but I'm sorry that I'm not absolutely certain) said something that just hit me in the heart with a big thud. She was talking about how her daughter is such an inspiration and mentor to her, because despite all the pain, difficulty and adversity in her life, Lindsay looks beyond that and ... "she just lives."
Just those three little words. She just lives.
She doesn't care how she looks. She doesn't care what people say. She giggles her way through her day. She adores her devoted family and friends. She's grateful for her time on this planet. She just lives.
Say no more.
|Lindsay and Kaylee, in Boston September 2009 for their |
final visit in the first clinical trial (for which they received
trophies!) and their 1st visit for the new, triple drug trial.