A Thank You & An Update

-


January 2016

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!

Love,
The Killians

Comments

Post a Comment

Popular posts from this blog

Why I started this blog

-
I was recently asked to help lead a new Mom's group at my church. In an effort to encourage other moms to join our group, we, as team leaders, decided to give "testimonials" about our lives as mom's. We were to share our testimonial at a "ladies luncheon" to which all the women of the church had been invited. I was scared. My face flushes with embarrassment just thinking about speaking in public. But I resolved to do it. And I knew immediately what story I should share. But again, I was afraid. The story I knew I should share was a difficult story for me to tell, and I wasn't sure I could share it without becoming too emotional. I didn't want to cry in front of a bunch of strangers! (Although that would've been a great testimony for my need of a mom's support group!) So I debated for a couple of days. What story should I share? The fear got to me, and I decided to share a comical story about my son...one that wouldn't make me cry. I stood
Read more
-
Mom(me) Moments I'm a mom. And I've discovered there are only two places a mom can really think. Number One: in the shower. Number Two: in the car. This is assuming the mom is alone in both locations. Because being a mom means that no place is one's own. Not even the shower. Small fists bang on bathroom doors, 8 year olds waltz in to demand "Where's my library book?" and "I can't find my shoes!" followed by "Yes, I looked!" Bathroom time is the place to learn about your child's latest LEGO creation and to discover which level of Wii Bowling he has just completed. And if you're as fortunate as me (and you have only one bathroom in the house)...well let's just say, my bathroom can be a very SHARED space! But sometimes, even a mom finds a moment to shower in peace. And T-H-I-N-K. This post revolves around an idea I had several months ago while doing just that. I had been thinking about how I had neglected my blog. My poor,
Read more

Alex and His Diagnosis

-
When I was a little girl, I remember thinking my life was good, too good, in fact. Nothing terrible happened to me. I enjoyed a fun childhood, and with the exception of some typical teen-aged confidence issues, I cruised into young adulthood carefree and happy. I always felt that God was preparing me for what was to come. And as crazy as this sounds, even as a 10 year old, I knew my trials in life would come later. ***** When the nurses placed my newborn son into my arms on July 26, 2003, I cried blissful tears of joy. He was soft and smooth and sweet, and I recognized his cute little nose from the sonogram pictures. Immediately, I thought, "Who are you, what is your name?" I'm a last-minute person, and even though my husband, Steve, and I had narrowed down our name choices, I was concerned about what we should call him. Within a few minutes, Steve and I decided to name him Alexander Michael, Alex for short. It was the perfect name for our perfect little boy. Two days lat
Read more