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
When my son Joey was born 16 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
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 firstname.lastname@example.org
Speech at 2016 Make-A-Wish Ball: https://www.youtube.com/watch?v=9QwsvbXP2S0
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.