Live Life Like Erin

Cf Warrior Erin Lyn McKenna was a spitfire from the moment she was born. Her mother, Jaime, insists that she took life and rattled it, drawing from it all the nectar and inspiring all who crossed her path to do the same because, as Erin so eloquently wrote to her many friends and family before her passing, “when the time comes that you can’t, you’ll wish you had done more.”

Diagnosed with CF two weeks before her ninth birthday, Erin enjoyed every moment of her life, smiling through even her darkest hours. She loved traveling and being outdoors, hiking, camping, shooting, and four wheeling. She rescued everything and anything that needed it, from people to mice. “The week before she died it was a hamster, Duke,” Jaime says fondly, “We transported it out of a Petsmart in a space-mobile home. I still have him.”

ErinStrong, Erin McKenna
ErinStrong, Erin McKenna

At her job working for a construction company, she put order to chaos everyday and was much loved by all of her co-workers for her spirit. She bravely moved a gator out of harm’s way and braved a storm washed bridge to help a lost chihuahua. Her courage and spunk was testament during her battle with cystic fibrosis. “I watched her go through unimaginable things,” Jaime says. “I watched on my knees, telling her I loved her and I watched her keep going no matter what.”

Erin insisted on living life fully with her friends, family and partner Kyle, and she was also committed to using her own battles and experiences with cystic fibrosis to help other CFer’s. In the last year of her life, she participated in antibiotic trials that ravaged her body and was gearing up to participate in Phage Therapies which use viruses to attack bacteria. CFer’s often develop superbugs resistant to antibiotics because of the amount of antibiotics they have to consume throughout their lives. She was completely tuned in with her body, and most often miles ahead of the doctors and nurses caring for her when it came to diagnosis.   

Erin never once faltered in her desire to live, even when things looked grim. She engendered the same determination in others. During a bad infection, the family was desperate to get her to Duke for treatment, but the amount of oxygen Erin required to stay alive was impossible to sustain with a regular travel itinerary, so her partner Kyle came up with a plan to hook Erin’s oxygen concentrators up to a generator on the back of his pickup truck, running her oxygen tubes through the back window. Jaime claims they went overboard decorating every hospital room, making it their own—they were spending so much time there, why not? This is the type of ingenuous tenacity and dogged resolution that our CF warriors consistently inspire in their communities to make things happen, to live life to its fullest.

Kyle, Erin and her brother,

They are the strongest creatures alive. I want to live like her. I want the world to live like her. I want CF’ers to know they are not alone.

Jaime Parsons, cf mom

Erin passed away at age 25 on February 11, 2020. She’d been going through rehab and had suddenly taken a turn for the worse. Jaime suspects that Erin had actually contracted COVID during the early stages of the outbreak. She fought for her life until the end. “They are the strongest creatures alive,” Jaime says of her daughter and all CF warriors. “I want to live like her. I want the world to live like her. I want CFers to know they are not alone.”

And cystic fibrosis is a very lonely disease. Warriors suffer weeks and weeks of isolation at home and during long hospitalizations. With this goal in mind, Jaime began to look for ways to shine the light of Erin’s legacy into others’ lives. She came up with a way to make long hospital stays in isolation more comfortable by creating packs of books and comfort provisions customized by age and preference for CF patients. Books, because Erin loved to read, and such items such as chapstick, booties, hand sanitizer, and dry shampoo. “CF is an expensive disease. These specific items go a long way for CF’ers.” Packs also include whimsical items like coloring books. The care packs are purple and customized with the hashtag #erinstrong. Jaime is still in the early stages of developing this program. 

ErinStrong Backpacks
ErinStrong Backpacks

When asked about Erin’s legacy, Jaime says, “I want the world to know that Erin’s light will shine forever. If you know what it is to live like Erin for one moment, you will know what it is to really live.”

Piper’s Angels will be honoring Erin’s memory at this year’s 2021 Crossing For Cystic Fibrosis Paddle Out Rose Ceremony. 

In a message she wrote to her friends and family before her passing, Erin urged, “Don’t bullshit and waste precious times and memories you could make with family and friends. Be grateful for every moment. Stop waiting for Fridays to enjoy the week. Stop waiting for Summer to enjoy Winter. Don’t live for the future, live for now.” 

Are you living life like Erin?

— Dani Diaz, Editor, Piper’s Angels Blog

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