My Great Strides Story
I save this request, this plea, to once a year. I understand how valuable your time, energy and resources are. My simple request is this. If you have extra, please consider investing in the Cystic Fibrosis Foundation.
When my son Joey was born 14 yrs ago, he didn't gain weight. When he was 6 weeks old, we checked into the community hospital not knowing when or if he would go home. A week later we were transferred to a Children's Hospital and the next day we knew why he was ill - Cystic Fibrosis. We knew the average life expectancy was 32 years old and we knew that there were medicines, treatments, medical professionals focused and specialized in the care of our son. We knew we were not alone and we had a plan. The was directly due to the work of CFF. Because of them Joey had the potential of a future. Before CFF was founded in 1955, parents were told to enjoy their days together and not expect much past elementary school. They didn't have many medicines or treatments.
Life Expectancy is now 42 -- which is WONDERFUL -- but as we all know, it's not near enough. But there is more to the story than the number of years. Its the quality of the days of those years. I thought I understood that before, but Joey has had a really really hard last 2 years. He's missed over 50 days of this school year last year. He's had surgeries, sinus infections, enterovirus, esophagus disease, lung infections, quarterly endoscopes, RSV and he's been knocked down so many times. It's SO hard to watch. I can't even imagine how it feels for him. But one the hardest parts has been his secondary illness of Eosinophilic esophagitis (EoE) and infections like RSV. EoE is knocking him down and keeping him treading water instread of thriving. It's hard to watch -- so we're taking Action. We escalated his GI care to the EoE team at Cincinnati Children's Hospital. Once we can figure out this auto-immune disease and it's triggers, we should free his body to take full advantages of the amazing advances in CF treatments like Orkambi that YOUR SUPPORT has MADE A REALITY. For bugs like RSV, the hard part was that there was nothing we could do to fight it or speed it up or make it go away. I've never felt more helpless or hopeless. In all of my years fighting CF, I've never felt this before. Because... decades of donors and volunteers fought and worked so hard -- there has ALWAYS been treatments for Joey. As exhausting as the daily routine is, as much as we wake up and think ugh. not another IV/nebulizer/vest treatment/pill/feeding tube.... These are such amazing gifts. You don't know, until you're left fighting something with nothing.
Please click the link and give what you can. The foundation makes amazing use of each gift and some of the drugs in the development pipeline look to be true game changers. We are going to cure CF in my lifetime. I know this. The urgency for me is that it also HAS to be in Joey's lifetime. We need as much as we can raise and as soon as we can.
Thank you so much for supporting us with love, prayers, thoughts, and everything else you do all year long.
All our love,
Joey & Caroline Benton, Joey IV & Keegan
CFF Donation Page:
Speech at 2016 Make-A-Wish Ball: https://www.youtube.com/watch?v=9QwsvbXP2S0