It’s been 9 years since we’ve started raising money for the Cystic Fibrosis Foundation. In the 9 years, we have seen new breakthroughs, including Orkambi, the miracle drug that Ethan has been taking for the last two years. We’ve seen what is coming in the near future and we can’t wait. We’ve seen their focus of treating children with CF to now expanding their focus on adults, as CF is no longer a child’s disease. People with CF are living longer because of new medication, research, and treatments.
Every year I ask my online friends for your support because while I never met many of you, in one way or another, you’ve been a part of my life for a long, long time. GG days.
Ethan just turned nine in February, and it’s been a rough year for him. In the last year, he’s been hospitalized for 8 days, developed a blood clot from his PICC line during hospitalization which he had to take blood thinners twice a day (Shots in the stomach), had 2 sinus surgeries, had a scare with being possibly diagnosed with CF related diabetes, managing his diseased liver, and constantly being poked and prodded, scanned and zapped. It’s a rough life for anyone, just imagine doing all that at age 9.
With all of that, we try to give him a normal childhood as much as we can. This year he has joined the cub scouts, learned to ride a bike, loves to play Fortnite, and with missing over 30 days of school, he still manages to maintains A’s and B’s (sometimes a C).
So this is why we fundraise, we fundraise with the hopes that this will lead to a normal life in the near future, so he can go out to eat and not worry about having to take medication to help him digest his food. Or spend almost two hours of doing breathing treatments\air way therapies each day.
This is why we, (the 70,000 people in the world with CF we) need your support. Can you donate, $5, $10, $20, $50, $100 for a very worthy cause? Please know, that the Cystic Fibrosis Foundation is one of the top charity organizations that uses your donation efficiently, and they have the results to prove it.
If you would like to donate, you can visit my page below. This week the Sacramento Chapter is holding a contest of any team who raises $500 by this Wednesday will earn a SALTY hat for the CF’er to wear on the day of the walk. I believe OO and GT can easily get us there.
Ken, Erin, Ethan and Lila