Hannah Deck

OUR STORY

Our now 22-month-old son was diagnosed with Cystic Fibrosis within a week or two of birth. This will be our second year walking to raise money for a foundation that has, without a sliver of exaggeration, put the sweet in bittersweet for us ever since we got that dreadful call.

I won't lie, being a medical mom, a medical family is so, SO hard. Not a single moment, thought, even movement we make throughout the day isn't overlayed by this disease. & it gets dark. It gets scary & sad & angry & really dark.

But that darkness makes the light so, so bright. Not just our son's smile - & luckily he might just be the happiest baby near toddler ever so there are lots of smiles - but also his care team, local CF Chapter & the CF Community at large. We are so lucky to not have to look far for all that is good in the world. & thanks to the CF Foundation, we don't really have to look at all. It finds us & showers our family with love, joy & hope. 

Of course, I would be remiss if I didn't mention the work the foundation does to advance treatment, invest in new & innovative therapies & ultimately find a cure - & we absolutely believe that day will come - but until then, until CF stands for Cure Found, the CF Foundation has quite literally given life to our lives.

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AN UPDATE ON LEON

We have been truly blessed these past 12 months with Leon's health. We've had no coughs, no exacerbated illnesses or hospital admissions (knock on wood).

He fought off a very brief stint with COVID-19 far better than I did & had one throat culture positive for pseudomonas aeruginosa, a bacteria most of us encounter many times a day without issue (it lives in things like water, plants & soil), but can cause major problems for CFers or the otherwise immunocompromised. With that said, he took to his nebulizer somewhat okay & was able to kick the infection after one 28-day treatment cycle.

As far as his daily treatment & therapy, Leon vests (picture a life jacket hooked up to a big old machine that makes it shake & break up any mucous trapped in his lungs) twice a day & is currently on just three medications (a pancreatic enzyme, a modulator & a specialty vitamin), all of which he takes like a champ.

For the most part though - & most importantly – Leon lives an extremely normal life terrorizing his parents & his dog & pretty much anyone within shouting distance because boy does this kid have some pipes & some lungs on him… He talks non-stop (about what we still aren’t particularly sure) & loves numbers & counting & really, really loves songs about numbers & counting. He’s currently working on his alphabet (as of my typing this he can get through ‘h’) & could open & shut a door all day, literally – we’ve tested it.

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CF & THE CFF

There is currently no cure for cystic fibrosis. By participating in Great Strides, I am helping to end this disease for thousands of people impacted by CF.

Cystic fibrosis affects the lungs, pancreas, and other organs. The symptoms can vary from person to person, and as people with CF live longer than ever before, their disease can become more complicated, leading to serious health issues.  

The Cystic Fibrosis Foundation has made extraordinary progress — including fostering the development of more than a dozen CF treatments — but these treatments are not a cure and not everyone can benefit from them. We must keep going.

By donating to my fundraising goal, you will help advance our mission for a cure for all. Please consider joining us and helping make CF stand for Cure Found.

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