My Xtreme Hike Story
Ellie holding the pills she swallows daily
I’ve never been accused of being too early, but this is late even for me!!
Our 13th Annual Xtreme Hike to cure cystic fibrosis is in exactly three weeks, and with my total lack of training, I’m expecting some serious struggles out there on the hills. My struggle will be real, but it will be one day. Sunday morning I’m back to life as usual, and that is our goal for every person with CF … to one day experience “life as usual” without the myriad of health issues that accompany their CF diagnosis. We have come an extraordinary distance from when Ellie was born, and we will always pause to celebrate every advance in medication and treatment, but until we cross that finish line, it’s just a pause and then we need to go right back to working for a cure.
I want to make sure I’m not glossing over those advances we’ve seen in the past 18 years, so I’ll start by sharing that Ellie just finished her freshman year of college, and what a remarkably healthy year she had! That’s not easy for ANY freshman living in the Petri dish of dorm life, but for a student with CF, that used to mean almost certain hospitalizations and significant declines in their lung function and overall health. Ten years ago when college still felt like a point in the distance, this knowledge would sometimes keep me up at night. Thankfully, Ellie’s experience was wonderfully different, and that can be attributed to the progress funded almost entirely by the Cystic Fibrosis Foundation.
65 devoted and hearty hikers will be hitting the trails at 4:00 in the morning on June 8th, and it’s a joy to be out there as one of them, working toward this common goal. When Ellie was diagnosed in 2005, Jon and I committed together to doing everything we could to slow the progression of this disease until a cure was found for her and the 70,000 people living with CF. Many of you have been with us from those first days, many more have learned about CF and joined us along the way, and we’re enormously grateful for every single one of you! Truly, Ellie’s world would look very different without the advances funded by her team of family and friends.
If you have any questions, would like more information about CF, the CF Foundation, or this hike, please be in touch, I would love to talk to you!
Our family is so grateful, thank you!
Jenica, Jonathan, Abby and Ellie Leo
10 Keith Drive
Norton, MA 02766
508.851.0131
Mailho@comcast.net
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