I’m one of those lucky people who has never had anyone close to me suffer from any great illness. In fact, I’ve never lost anyone close to me. I have friends of course who have been through devastating illnesses and losses, and it’s always been so confusing to me why some people have to endure such things, while others never have to. In the absence of a personal connection to any specific cause, I’ve been looking for opportunities to give back in new ways. In March I had the opportunity to work with Dane Sanders and several other local photographers on a shoot for the Cystic Fibrosis Foundation. For those of you that don’t know, (or who only know a little about it from a recent episode of Grey’s Anatomy like I did!), Cystic Fibrosis is an inherited chronic disease that affects the lungs and digestive track. A defective gene causes the body to create a thick mucus that leads to life threatening lung infections and inhibits the body from breaking down and absorbing food. The average age of survival for a person with CF is only in the mid 30′s! We were told that a typical day for one of the youngest kids we photographed, at age 2, includes strapping a machine to his chest that vibrates aggressively to break up the mucus in his lungs, while doing breathing treatments, for 45 minutes both when he wakes up and before he goes to bed at night. And that’s on a good day. If he’s sick, it could be 5 or 6 times a day. Having a 2 year old myself, I just can’t imagine watching your child go through this, all well knowing his life would be cut short at any time.
On the bright side – we were also told – a cure is close! Very close! There is a drug in clinical trials now that actually fixes the cause and will cure some cases of CF. Another drug that will cure the vast majority of cases is on the horizon as well. And in the meantime, new therapies to extend and improve the quality of life of those living with CF are being used and developed every day.
The annual CF walk, Great Strides, is on May 21st at the Huntington Beach pier. Dane worked with the foundation to organize a day for several local families that have kids with CF to come down and be photographed for the promotional materials for the walk. I volunteered to help and got to shoot 4 of the 16 kids that came out. They are THE most amazing kids! They are brave, and resillient, and while they suffer from this devastating illness, they look and act just like any other kids! They laugh, they smile, they joke, they play!
Meet 4 year old Parker. He wasn’t sure about me at first, but it didn’t take long and his adorable, infectious smile was out! He and his family were getting ready to go to Costa Rica in a few days. He is a sweet, shy, and lovable little guy!
Taylor, age 10, had just gotten a new puppy. Her mom described her as an ‘old soul’ and said she had accepted the possible outcome of her disease and had made peace with it. She talked as openly about her illness as she did about her love for surfing, video games, and kickboxing. I persuaded her to show me some of her moves!
Lauren, also age 10, loves to draw horses and play water polo. She’s one of only a few girls on the team and she can hold her own better than anyone with the boys! She is smart and thoughtful and sweet.
3 year old Sam was all boy! He wanted nothing but to run and jump and play in the waves with his dad! Nevermind that his dad was in a full suit – those pants were rolled up and they played in the water until long after I’d finished shooting!
Working with these families touched me in a way that I haven’t been before. And having the opportunity to help was an amazing gift! The foundation is currently fundraising for the Great Strides walk to find a cure for CF. I encourage you to check it out!
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