It is that time of the year - AGAIN!!!
"Join the Sprinkle Family as we celebrate a DECADE of Great Strides!! We are closer to a CURE than ever before - come walk with us and be part of the miracle! Join us on Saturday, May 16th at 9:00 a.m. in beautiful Suwanee Town Center for my favorite event of the year!!" Erin is shooting for 100 walkers this year; our by-word for this year is "Sailing for a Cure", with a "pirate" focus. Back to Year One, when we were "Caleb's Crew".
Words cannot express our appreciation for all the help you have given over the last 9 years! (Erin tells me her team - you included - has raised somewhere in the neighborhood of $160k over that period of time; going for $200k+ for 10 years!)) Some of you are just getting started - thank you for joining us to give Caleb a long life! Cystic fibrosis is a life shortening, genetic disease. When Caleb was born in 2010, the average life expectancy was about 32 years; today, with adequate care, life expectancy has extended into the 40s. Lots of progress has been made in recent years - thanks in a large part to people like you who support this life-lengthening work.
CF is an "orphan" disease; there are only about 30,000 people in the US who have CF, and another 40,000 in the remainder of our world. You can see the difficulty in doing the costly research - companies find it hard to recapture their investment. That is where the Cystic Fibrosis Foundation comes in. This organization funds a tremendous amount of research into therapies and medications. Thank you for your help!
Now, on to more exciting things.
It is just amazing that Caleb has made it through his 10th birthday without a "tune-up"! What's a tune-up? When triggered by an episode of congestion, etc, a CF patient will be put in the hospital for a "tune-up", lasting 14 days. On Day 1, Caleb would undergo a bronchoscopy - going down into the bottom of the lung, taking a sample of what is growing there - and something is always growing, according to Erin. Day 2 - 4, the culture is "grown out" to determine the appropriate antibiotic to kill it. Day 5-14, Caleb would undergo 10 days of IV antibiotics. (This is all according to AL - and I am not medically astute!) I can't imagine going through that myself, much less standing next to his bed, watching him go through it!!! He continues at tennis - still a good "tenniser". He loves his bicycle, and rides as often as he can get permission. He is quite a corker!
By the way, let me tell you a little about what this young man goes through every morning and evening - and this doesn't end - ever. In the morning, before school, he takes a vest treatment of 30 minutes; while taking the vest treatment, he also inhales hypertonic saline. After this, he takes a Kalydeco pill. In the evening, he gets another vest treatment - this time 45 minutes. While this is happening, he takes another hypertonic saline solution treatment, followed by 15 minutes of inhaling pulmozyme. And then, another Kalydeco. Amazing!
We are awfully proud of this young man, of his Mom and Dad, and his older brother. They all work together to give Caleb a longer life.
Here is a link to a video that Erin has posted in her letter; it is about 4 minutes and well worth the time to watch. It'll give you a good look at the family and what they go through on a day to day basis with CF in the home. https://vimeo.com/199934500
And here is a link to the Children's Healthcare of Atlanta with Caleb's story in it - it is a couple of years old, but a good read. http://childrensatl.uberflip.com/i/742218-small-wonders-community-report-2016/0?m4=
Will you think of helping us out again? There is no amount too small - just a little help goes a long way. We want to give this little boy lots of years of being a great "tenniser".
(Don't forget, if you can help us out, and work for an organization that matches these gifts, please be sure to ask for a match.)
Our heartfelt thanks to each of you!