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OUR STORY

Our number one little guy is one of 30,000 Americans and 70,000 people worldwide living with cystic fibrosis (CF) – an incurable, life-shortening, genetic condition.

We found out Zane would have CF when I was 16 weeks pregnant. The doctor

told us that many people choose to terminate their pregnancy with this diagnosis.

We were so excited to be pregnant and thought that we were going to lose our

baby. After the immediate devastation started to fade, we started doing research.

One of the places we called was our local Cystic Fibrosis Foundation (CFF)

chapter. The Director got on the phone with us immediately and answered all of

our questions, shared her hope for the future of people with CF, and connected

me with another CF mama in town. It was my conversation with this mama that

really started to change my thinking on our situation.

Almost a year ago, Zane had his annual chest x-rays and they were not as pristine

as the year before. On the one hand, I was dying inside that his "normal"

childhood wouldn't be as carefree as other children, and on the other hand I am super thankful for the 19 months of treatments and drugs that have been available to him since birth.

Having a kiddo with CF has affected every relationship and interaction in our lives. “Is anyone in your house sick? Sorry, we can’t come play.” “Do you keep up with vaccinations? Sorry, that’s a deal breaker for us.” “Come see your family? Sure, as soon as everyone has gotten their flu shots.” As a mama, it is hard enough to do what’s best for your children -- it’s even more difficult when you live in fear of them catching the bug that is going to hospitalize them.

Zane is just getting over a cold. That may not be a big deal to most people, but for him it is very important that the mucous from the common cold doesn’t settle into his chest. To keep this from happening, he needs to do four 30-minute sessions of his vest and inhaler. He also has to use inhaled hypertonic saline to help him cough mucous up. On top of that, he has to eat, sleep, take super vitamins and allergy medication. Let’s not even mention time to play and just be a kid. To accomplish all this, we have an hour-by-hour schedule for each day. Caring for someone with CF is a full time job!

Fast forward 3 years from when we first found out CF would be a part of our daily lives, and the average age for people who are born with CF today has increased from 35 to 47!!! This is 100% from new drugs, therapies and treatments which wouldn't be possible without the support of the CF Foundation.

Thank you so much for your support.  We're getting closer to a cure, one step at a time!

 

Sincerely,
Amber & Brad Volkin