Walk for the Cystic Fibrosis Foundation on Moonlight Beach

Written by Katrina Young

What would you do if you were told that your child had a chronic, progressive and ultimately fatal disease? The easy answer is that you would walk to the ends of the earth to find a cure. The harder reality is finding the right path to search for that cure.

Depending on how you look at it, I am either lucky or unlucky in this regard. Unlucky in the sense that nearly 13 years ago, my son was diagnosed with cystic fibrosis. Just four days before Sean’s second birthday, my husband and I found ourselves sitting inside the pastel, yet sterile, confines of a pediatric hospital. Perched on hard, plastic chairs, we listed to our son’s doctor explain what the disease was and what it meant for our son. While my son played innocently at my feet, I heard phrases like “decreased lung function,” “reoccurring hospital stays,” “irreversible organ damage,” and “limited life span.” And those words literally took my breath away.

But in the very next breath, our doctor softened his ominous description with hope. At the time, the life expectancy for a child living with CF was only 31, but was rapidly increasing. The reason behind that fact was that the disease also had a foundation that was established by parents and physicians who worked passionately to fund CF medical research. 

Suddenly, I felt lucky in the fact that I now had a very clear (and very optimistic) path laid out before my eyes. And less than a year later, my family found ourselves literally walking for a cure. Great Strides is the CF Foundation’s largest annual fundraiser. This year it hopes to raise over $35 Million, with more than 90% of those donations going directly to research labs across the nation.
Currently my son takes over 13 different medications (swallowing up to 30 pills and inhaling 5 others through a nebulizer or similar device) to keep himself healthy. And while that sounds like a lot of medications for one (almost) 16-year-old boy, my son is grateful for every single treatment, pill, vial, aerosol and injection. Because, every single one of them gives him hope for a long and healthy life. There isn’t a single day that goes by that we do not think about the fact that we have all of these options because of past fundraising efforts. Virtually every medication that Sean takes at home or when he is hospitalized is available to him because of Great Strides and other similar CFF sponsored events.

I am sure there are many people who think that we are unlucky, given the fact that we live with the burden of our son’s disease and the uncertainty of his future. But we consider ourselves lucky in virtually every other sense. We are lucky to have a son that faces his disease with courage and strength. We are lucky to have caring doctors who treat our child and others like him with skill and compassion. We are lucky to have a Foundation that is willing to create a better life for CF patients across the nation. And we are definitely lucky to have Great Strides marked clearly on the calendars of all our friends and family members who support us in our efforts to find a cure.

They know that to my family, Great Strides is more than just a walk.  Symbolically, it is a heartfelt reminder that life is precious and worth fighting for each and every breath. And if we collectively keep putting one foot in front of the other, we will eventually get to where we need to go. But in reality, the purpose behind the walk is simpler than that. We walk so CF patients across the United States can breathe. All 30,000 of them. 21,000 breaths a day. 7 days a week. 12 months a year. For the rest of what we hope will be their long and productive lives.

I love my son. And I know that I will always keep walking for him. No matter what. For as long as it takes. Until we find a cure. I would gladly walk to the ends of the earth and back if it meant that Sean could start his day without treatments, eat meals without medications, not worry about hospitalization and never have to face his own mortality before he is ready. However, I also know that this is something I cannot do alone.  The cure for CF depends on all of our collective hopes, actions, donations and support.

So with that in mind, I will like to invite anyone in San Diego to join us on May 3rd at Moonlight Beach (Encinitas, CA). The walk promises to be a family-oriented celebration of all that the CF Foundation has accomplished, as well as all the progress we hope to make in the upcoming years. A cure literally is just right around the corner. We just need to keep putting one foot in front of the other. And keep our eyes clearly focused on the path that we are lucky enough to have laid out before us.

Walk Information: May 3, 2014
Moonlight Beach (Encinitas, CA)
Registration begins at 8:30
Walk starts at 10:00
Contact Stasha Ybarra (sybarra@cff.org) with questions

You may also donate or register to join Sean's Super Striders by visiting: fightcf.cff.org/goto/seansuperstriders