I’m not a band wagon girl. Never have been. I didn’t go to the school pep rallies, I don’t play candy crush and I don’t post cryptic messages about bra colors to spread awareness of things that aren’t obvious.
But when I heard about the ice bucket challenge, I knew this was one band wagon I was getting on.
Why? Because of this beautiful child. Kaitlin was a student at the school that I used to teach at and as a lucky participant in her life, I went to her funeral several months ago.
There’s lots of complaining going on right now about people being sick of the ice bucket challenge and as someone who easily gets sick of hearing about things, I get it. But I also think that the people sick of the challenge have never known anyone who suffer from this horrible disease. I feel like it is the least I can do to humanize ALS for those of you who are tired of hearing about it.
ALS appeared in Kaitlin’s life a few years ago. She was a perfectly normal little girl, running on the playground and laughing with her friends. She suddenly started slowing down and limping more often. The limping quickly turned to hobbling and then even quicker turned to not being able to walk at all. Her speech became less and less until it became impossible for her to communicate with words at all. Kaitlin had no shortage of friends or loved ones who did everything in their power to make her life as special as it possibly could be. But ALS did what it intended to do and took her life at 15 years old. Nothing could stop it and unfortunately, there’s just not enough people that suffer from it for it to be at the forefront of medical research.
Having people feel sick of hearing about it means that ALS is finally getting the recognition it needs. YES, there are many other under recognized diseases that also need their time to shine. But please don’t take away Kaitlin’s moment in the spot light by feeling annoyed.
So why not just donate? What’s the point of the ice? First of all, the obvious reason is that it got your attention. It worked. But the reason I think it’s so important is while Kaitlin lost her ability to communicate, she held on to her ability to laugh and smile. Kaitlin’s laugh could change the world with the power behind it. There was nothing she enjoyed more than when people made complete fools of themselves and gave her a reason to connect with them with her laughter. So if the world spends a few weeks dumping ice on their heads to make that precious angel look down on all of us laughing hysterically in her honor, then everyone who has participated, whether by donating, dumping ice on themselves or hopefully both, then this has been a true success.
I hope at the very least, you’ll think about our sweet friend who lost this horrible battle to ALS when you see people participating and understand that awareness is everything in the fight to beat this thing.
We had the pleasure of photographing Kaitlin for Houston Family Magazine a few years ago. The experience was a blast for Kaitlin and us!
I’d like to thank my family for getting on board and letting me take their portraits while we participated for Kaitlin!
I’ve just learned about Project ALS, who donate 90% of every dollar to research.
To Donate to The ALS Association: Visit The ALS Association here.