Our story with Cystic Fibrosis (CF) begins in April of 2014, when our 1 week old baby girl, Belle, was diagnosed with CF. We quickly became familiar with what this disease was and how it progresses and the treatments thus far. She started taking enzymes (yes as a 1 month old baby!) and soon began twice a day chest physiotherapy. Soon, nebulized medicines were added into this mix. Several months later, she was hopsitalized for a common CF bacteria infection (Pseudamonas). We stuck to our routines, we stuck to the daily medicines. We worked hard together and, as a result of grace from God, we have a pretty healthy 4 (almost 5!) year old girl. But seriously, we have our routines and meds and we don't depart from those. I have many roles in her life: the keeper of the pills, the breathing treaments, the encourager, the enforcer, the weight tracker, the symptoms checker, health care advocate, the keeper of appointments. These in addition to the wonderful role I have as her mom. I'd be lying if I said it was easy and I loved every minute of it. Sometimes she cries about treatments and I want to just melt down with her and cry from grief. It's okay to feel sad about having to manage a chronic illness. But something I learned a long, long time ago but that we will not let her feel sorry for herself. Feel the sadness and KEEP GOING. We march onward. Belle is/has been on a trial med that frankly was a game changer for being able to properly absorb her nutrition. Since being on this medication, she has maintained a very healthy weight and had very little sickness. The medicine trial she was in was a DIRECT RESULT of fundraising from the CFF. I cannot say enough good things about this organization and how they fight for our loved ones with CF. They are on the mission with us. Please join our mission and consider donation to our cause to add tomorrows to Belle's life and hopefully find a CURE for this disease.
Now I'll hit you with the scary facts that I don't want her to know quite yet:
The median age of CF patients is somewhere between 30-55. Though individuals with CF die younger than 30, many more are starting to push that median age up! We can do better than this. Again, we're marching onward and planning for Belle to live a longer, fuller life than her predecessors, thanks to the amazing advancements made in CF treatments and care in the past several years.
Now here's the standard CFF blurb about Cystic Fibrosis: (All true. Sometimes, you just need a face to these statistics. Belle is one of these 30,000.)
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, and friends who struggle every day just to breathe. I walk for them. Will you join me and support my fundraising goal?
Real progress has been made for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. We’ve come so far, but there’s still so much work to do. I will not stop striding until all those with cystic fibrosis have a cure. Will you join me? Please consider donating to my Great Strides fundraising campaign today!
Please support me!
We are at a pivotal moment in the history of cystic fibrosis and your support matters. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting groundbreaking research and medical progress towards a cure. Please help me reach my fundraising goal!