The Fight Against Cystic Fibrosis

Hello, my name is Alex and I'm a loving mother of 5 beautiful blessings. And it just so happens that 2 of my precious babies were diagnosed with something called Cystic Fibrosis.

Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.
In people with CF, a defective gene causes a thick, sticky buildup of mucus in the lungs, pancreas, and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage, and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients. Cystic Fibrosis is life threatening and life shortening as well.  As it is categorized as a terminal illness. The median age is in their 20s.

Now here's our story on why we are reaching out for help........

After having Bobby who was diagnosed with Cystic Fibrosis (he is now 9) my family made the necessary adjustments to ensure that he received all the care and attention he needed to remain healthy, such as all his oral medicine, chest therapies, and 2-4 week hospital stays. After several attempts to get him to gain weight, they put a feeding tube in his stomach, this is permanent.
Our family made several adjustments and I ended up working while Zack my husband stayed home and tended to the care of Bobby and Mason (at the time). We then had Aubrie and then Asher. And Zack remained a stay at home dad while I worked
We found out we were pregnant with our fifth child and were ecstatic. One more addition to our growing family. Jonah joined our family on August 17, 2017. Such a joyous event for all of us! We then received a call from the hospital telling us that Jonah had Cystic Fibrosis. Imagine the shock. Zack and I were in disbelief because we had three other children that were fine. None of them with Cystic Fibrosis.
We were in denial. How could this happen again?
With having 2 children that need extra care.. Jonah who is 1 yr old is doing chest therapy and is started on enzymes as well as reflux medicine and special vitamins designed for CF. Jonah also had a feeding tube placed back in June. With CF your immune system is suppressed and it is also hard to gain and keep weight on. We are headed in for a hospital stay that as of now is time framed at 2-4 weeks during this time work will be limited and of course time and bills don’t slow down for you so any bit of help to help get is through this time would be greatly appreciated. This will also help Zack to continue being able to stay home with our boys.

*we’ve basically spent our whole summer in the hospital. During this time I lost 2 different jobs. I’ve just started a new one so hopefully this time everything works out*

ALL DONATIONS AND SHARES ARE GREATLY APPRECIATED



Donations

  • Studio 19 
    • $200 
    • 19 mos
  • Jennifer Goodrell 
    • $10 
    • 21 mos
  • Ronald Nebbia 
    • $100 
    • 22 mos
  • Laurie Cervini O'Hara 
    • $50 
    • 22 mos
  • Holly Goodrich 
    • $15 
    • 24 mos
See all

Organizer

Alexandra CFmama Snyder 
Organizer
Rochester, NY
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