My Xtreme Hike Story

 

 

Instead of participating in the Great Strides Walk this year, I have decided to do an Xtreme Hike to raise money for Cystic Fibrosis. I will be hiking 30.1 miles on the Appalachian Trail in October. I am not a hiker, nor have I ever done anything like this but I am looking forward to the challenges and opportunity that training and the event itself will bring. 

As many of you know, Kennedy was diagnosed with CF when she was 3 weeks old. At that time, I had recalled hearing about Cystic Fibrosis on an episode of Grey’s Anatomy, but knew nothing else about it. After her diagnosis, I reached out to the CF Foundation to get involved in order to better help support Kennedy and others with CF.

In so many ways Kennedy is a completely normal 10 year old girl (well, today’s version of normal for a 10 year old). She is obsessed with makeup and skincare, she wants Starbucks as often as she can have it, she love her dogs, and has amazing friends. But behind the scenes, Kennedy does a lot to maintain her health. Every morning and evening Kennedy spends 20 minutes doing a vibrating vest treatment, which helps to loosen mucus in her lungs. She also does inhalers and breathing treatments every day. Twice a month she receives 3 injections. She takes medication daily. And every 3 months we spend half a day at UNC for appointments and testing. When Kennedy gets a virus it often affects her much harder than the average person and sometimes she will end up needing to be admitted to the hospital for low oxygen levels. In Kennedy’s lifetime she has had 5 hospital admissions; the first being at 2 months old and the most recent being December 2023. This past February Kennedy almost had to undergo a 3 week admission for IV antibiotics following a serious lung infection; luckily however we were able to beat it before that became necessary. However Kennedy doesn’t allow these things to get her down; she continues to be the amazingly bright spirit that she is.

As a parent, it is never easy to see your child sick in any form or fashion. And besides trying my best to ensure Kennedy keeps up with her treatments, there isn’t much more I can do to help her battle her CF. But one other thing I can do is help provide awareness to others and do my part in helping fundraise to find better treatments, and eventually a cure. 60 years ago, most children didn’t live long enough to attend elementary school… but that is no longer the case. When Kennedy was born, she was given a median lift expectancy of 39… today, someone born with CF has a median life expectancy of 51. In 10 years, we’ve seen that much of a change! With your help, that number will continue to grow and grow. Over the last 11 years, Team Kure for Kennedy has raised over $200,000 for the Cystic Fibrosis Foundation…and we will not stop until there is a cure.

I would greatly appreciate your support. As you may know, there is currently no cure for Cystic Fibrosis, but many remarkable advancements are being made with are having a profound impact not only for Kennedy, but others with Cystic Fibrosis. Please consider making your tax-deductible donation to the Cystic Fibrosis Foundation, or joining me on the Xtreme Hike in October. 

Thank you for your support! By donating to my fundraising goal, you will help advance our mission for a cure for all. Please consider joining us and helping make CF stand for Cure Found. If you’d like more information about joining our team and hiking with me in October please reach out to me! Would love to have you join us!