|Great Strides Walk in May|
As 2015 came to a close, so did our fundraising year for the Cystic Fibrosis Foundation (CFF). With a new baby, Steve’s new business, and the various activities of our day to day lives, I wasn’t sure I could fit fundraising into the mix this past year. I decided to use the CFF’s online tools and, a few days before our Great Strides Walk in May, began a last minute fundraising campaign with the help of Facebook. Once again, I was blown away by the generosity and thoughtfulness of family, friends, acquaintances and complete strangers. Alex’s soccer team also surprised him with a donation at the last soccer match in May. We are humbled and grateful for all your support for Alex and for all those battling to live a normal life with Cystic Fibrosis. Thank you!
I just want to take a moment to say that your donation is money well spent. The Cystic Fibrosis Foundation is a phenomenal organization. It was created in 1955 by a group of parents who wanted healthier and longer lives for their children. At that time, most kids with CF did not live to attend elementary school. Through the CFF’s continued efforts to find new and better treatments, the average age for CF now is about 40 and continues to grow. A new medication called Orkambi was just FDA approved this summer, and Alex was able to start it once he turned 12 at the end of July. After getting through the initial side effects, Orkambi seems to be doing its job, which was evident at his last clinic appointment with a 3 pound weight gain in just two months!
|Alex receiving the surprise donation from Coach Rodriguez|
On a more personal level, 2015 was a bit rough for Alex health wise. He had sinus surgery at the end of May to remove a rather large polyp, and recently, he had a drop in his lung function. The doctor added treatments and medications, and Alex continues to take it all in stride while maintaining a positive attitude.
In April of 2015, Alex’s CF Care Team referred him to have a wish granted through Make-A-Wish. After much deliberation, Alex had it narrowed down to two wishes: to meet astrophysicist and host of Cosmos, Neil de Grasse Tyson or to travel to Ireland to learn more about his family’s heritage. In the end, he chose Ireland. What a kid! The trip is scheduled for the end of March, and if all goes as planned, we’ll be learning about the ancient history of the Killians and attending mass in County Roscommon on Easter Sunday!
Thank you once again for your donations, support, and prayers. Here’s to a healthy 2016!