This Author Honors Her Granddaughter’s Health Battle & ‘Feisty’ Spirit in a Touching New Book

Kim Scharf got the idea for her book when her granddaughter went to the emergency room. It wasn’t a rare occurrence, but this stay would be a long one, lasting two months as complications arose from the debilitating health condition she’d been born with. Waiting at home while the rest of the family — including Kim’s daughter and Evan’s mom, Lindzi — went to the hospital, Kim didn’t know what to do with herself. “So I sat down,” she tells SheKnows, “and honestly, it just kind of poured out.”

“It” would eventually become the story-slash-poem-slash-children’s book called Piper Joy and the Grand Old Tree. Released last November, it’s Kim’s ode to Evan, who died two months shy of her fourth birthday. It’s also a projection of Kim’s unrealized dreams for her granddaughter and a celebration of her unique spirit, which was “unlike anything I’ve ever felt,” Lindzi tell SheKnows.

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Battling a rare, devastating disease

Diagnosed with a mitochondrial disease at four months old, Evan Frances Buckner’s life expectancy was somewhere between 16 months and four years. Mitochondrial diseases are considered rare — affecting just 1 in 5,000 people, studies say — and harrowing. Defined by Mayo Clinic as a group of genetic conditions that affect how mitochondria function in the body, mitochondrial diseases can affect nearly any part of the body, including cells in the brain, nerves, muscles, heart, and kidneys. And, unlike other diseases, earlier diagnoses mean worse outcomes.

For Evan, it started as a string of small, seemingly unrelated symptoms. “She had extreme acid reflux,” Lindzi recalls. “She started having these choking fits that they labeled laryngomalacia, but that was expected to correct itself on its own. She had mild hydronephrosis [kidney swelling from built-up urine], also expected to correct on its own.” Evan was also born deaf, “which was shocking in and of itself,” Lindzi says.

Any one of the symptoms, taken separately, weren’t necessarily considered serious. Altogether, though, “these little things were adding up to something,” Lindzi says.

Eventually, Evan came down with a cold that got so bad, the family had to take her to the hospital, a pattern that would repeat itself again and again. “Any time she got a cold,” Lindzi remembers, “we had to go back to the hospital because of how it impacted her.” It was two years before Evan was finally diagnosed with a mitochondrial disease.

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“Being in her presence was literal magic”

There is no cure or treatment for mitochondrial disorder, and Evan faced dozens of physical challenges every day, including not being able to sit up on her own. She received nine or so medications every morning via syringes. Despite it all, Evan was full of an infectious joy, Lindzi says.

Part of it was her unique style. Evan rocked her signature pair of sunglasses and a sweet smile, and had an aura that made strangers stop her family in the street, saying things like, “You just made my day. Just seeing your child made my day,” Kim remembers. “Evan had a presence that people would flip out and clasp their heart when they saw her,” Lindzi agrees.

That quirky style was a reflection of her spirit. “We dressed her in a way that let people know, the second they saw her, what we saw without all of that,” Lindzi explains. “Being in her presence was literal magic.”

Evan also got cochlear implants, electronic devices that improve hearing by delivering sound signals directly to the auditory nerve, per Mayo Clinic. (Hearing aids, in contrast, simply amplify sound.) The implants “changed her life,” Lindzi remembers, and Evan quickly became a music lover (Ludacris’ “Llama Llama Red Pajama” was a favorite) and a bookworm who loved when her family read to her.

“She was feisty and joyful, and she was feisty and joyful despite,” Lindzi says. “I think it’s a lesson to us and to anyone that she had every reason not to smile and yet she smiled between those hard moments. She was really something.”

Honoring Evan

Evan has inspired everything from Kim’s tattoo (a llama, for the aforementioned song), rings, and articles (written by Lindzi, a journalist). Even the name of Evan’s baby brother, Reid, is connected to Evan, as both an homage to Lindzi’s brother and Evan’s love of books. Reid was born just three months before Evan passed away, and Kim says, “Evan made sure she stayed long enough to meet him.”

Now, Evan even has her very own children’s book in Piper Joy, something Lindzi and Kim agree she would have loved. “Evan liked anything about Evan,” Lindzi laughs.

Piper Joy herself doesn’t have mitochondrial disorder. She’s also older than Evan and physically able to do things Evan couldn’t, like walk and stand on her own — although eagle-eyed readers will notice that Piper Joy’s bright red headband is, in fact, a set of cochlear implants like Evan’s.

But when Kim explains it, the connections all make sense. Piper Joy, she explains, is a projection of who she believes Evan could’ve been without the mitochondrial disease, while taking inspiration from the curiosity and joy Evan felt in the world around her.

“We spent a lot of time in her backyard,” Kim explains. Since Evan couldn’t sit unsupported, they would lie together on their backs, looking up at the sky, the trees, and the things around them. “I used to watch her, and her eyes would just shift and look all over the place,” Kim says. “So many of the things that are in the yard [in Piper Joy] are actually in Lindzi’s yard. I gave this child the ability to speak for Evan and say what it is that made her feel this was her safe place.” The book will also help other people struggling with similar health problems, Kim says, as a portion of its proceeds will go towards mitochondrial disease research non-profit organizations.

And the response to the book, overall, has been supportive and touching. “I’m still blown away by the notes that I get about Evan,” Lindzi says.

“Every parent wants to know that their child had every opportunity to make their mark,” she continues. “Evan didn’t have the opportunity to [do that] on her own, and yet her spirit made such a mark on all of us. That’s why we feel it’s our privilege to be able to carry on her legacy.”

Evan’s story, Kim and Lindzi say, shows that we should never take anything for granted. “She had to try so hard for every bit of her existence. Just breathing was an act of resistance,” Lindzi says. “Just existing was an effort. A smile was an effort” — and yet Evan smiled constantly. “I just have such profound appreciation for that.”

Piper Joy is a way to pass that message on, honor Evan, and share her spirit, all in one. “This is lighting up the sky with her name like a flame,” Kim says. “That’s my contribution to it, and it’s been a pleasure.”