Monday, January 4, 2016

Ready For a New Year

2015 was a year full of ups and downs.  
At the beginning of the year, I was frustrated about E's health and the fact that we were doing the same things over and over and expecting different results...
Insanity?  Yes!  
None of it made any sense to me, but I'm not a doctor.  I'm not supposed to know how to handle complicated cystic fibrosis related problems.  So when they told me "kids just get runny noses" or "she's too young to have sinus problems" or "time to start another round of antibiotics" I just went along with it.  I was frustrated and confused and I felt like no one was listening to me.

At the same time, our family was ready to start our annual fundraising for the Cystic Fibrosis Foundation.  They have all been so supportive and wonderful and excited to get involved in raising money for CF, but I just wasn't into it.  I was completely ready to forego Great Strides last year and just take some time off from fundraising because the everyday stress of CF was more than enough for us to handle.  But luckily, I was talked back into it.  With the help of our family and friends and people we don't even know, Emery's Angels raised over $33,000 for the Cystic Fibrosis Foundation.  I look at that number now and I can't believe I thought about taking a year off!

One of the big highlights of the year in the CF community was the FDA approval of Orkambi for CF patients ages 12 and older.  It is the first drug to treat the underlying cause of cystic fibrosis in people with the F508del gene mutation (which is what E has).  This breakthrough would not have been possible without the help of the Cystic Fibrosis Foundation and all of the wonderful people who donate year after year.

In addition to the extraordinary amount of money we raised, we also figured out why E was getting sick so often.  Nasal polyps and blocked sinuses.  After 2 sinuses surgeries, one in June and one in September, she got some much needed relief.

We know there will be hurdles to jump in 2016 as well, but this little firecracker is ready for whatever the new year brings!