Ellie Messer has been through more surgeries and medical procedures in her 6 years, than most people have in a lifetime.
So when it’s time for medical appointments, she’s not afraid to ask questions and expects her doctors to explain things to her until she understands
Ultimately, it’s Ellie —with support from her parents, Cyndole and Calvin Messer — who makes the final decisions about her care.
“She’s very into knowing her doctors and what they are going to do,” Cyndole said. “Even when it’s a (procedure) that can be scary she still wants to know…She’s become a very good advocate for herself.”
Cyndole and Calvin have always been very honest with Ellie about her diagnosis of diastrophic dysplasia, a genetic disorder that causes dwarfism.
That’s given her the confidence to use her voice — not only to get help when she needs it — but to ask for space to try things on her own.
“We’ve told her, ‘However you want to navigate these waters, we are there to support you,” Cyndole said. “Our goal is just to continue to give her a voice.”
‘Quite the miracle’
When they watch their daughter playing with her big brother AJ or dancing at ballet class, it’s easy for Cyndole and Calvin to get emotional, thinking about how far she’s come.
“She is quite the miracle,” her mother said.
Before Ellie was born, scans indicated that she could have campomelic dysplasia, a form of dwarfism which is often fatal to infants because their lungs do not have enough room to grow.
As Ellie’s due date grew closer, her parents began preparing for her funeral.
So they were stunned, and amazed, to see their newborn daughter look straight into her father’s eyes and start breathing on her own.
Although Ellie’s diagnosis was less severe than anticipated, she still faced medical challenges.
During the 97 days she spent in the NICU at Children’s, she had numerous surgeries, to repair her cleft palate, reconstruct the shape of her ears and place a tracheostomy and a g-tube.
When they finally got Ellie home, one of their biggest concerns was helping her learn to use her mouth and eventually learn to eat.
They connected with the Licking County Board of Developmental Disabilities’ Early Intervention program and Ellie began speech therapy.
Their hard work paid off, and Ellie is now a big fan of eating Olive Garden and Chick-fil-a.
Through countless therapy sessions, Ellie learned to walk with a walker. Her parents began working with Southwest Licking Schools and LCBDD, planning to help her navigate preschool and prepare for kindergarten.
The Messers believe that Ellie was the first person with dwarfism, as well respiratory complications, in SWL’s preschool program, but the transition went incredibly well, Calvin said.
“We are learning just as much as they are,” he said.
After two years of preschool, Ellie had a great year in kindergarten and is looking forward to first grade.
“They have been incredible,” Cyndole said. “They’ve been really communicative and willing to fight for her. They’ve come up with adaptive things we didn’t even think about.”
‘She’s going to change the world’
There’s been a few times where people are taken aback, watching Ellie work to reach something or get into the car, and ask why someone isn’t helping her.
But her parents know that’s not what their daughter is interested in.
“She wants to do it by herself,” Calvin said. “She’s very independent, she’s not satisfied if someone is doing it for her.”
Over the years, Calvin has pushed Ellie to find new ways to do things like climb the steps or open her bedroom door.
“She might not do it like everyone else, but she needs to find a way,” he said. “There’s nothing she can’t do.”
They’ve also had some honest conversations about some of the things Ellie might hear from others about her size and what she should do if someone says something unkind.
When the school year started, she sometimes had to correct her peers, “I’m not a baby, I’m 6, I’m in kindergarten!”
But soon she was able to focus on learning and making friends.
Her parents were thrilled to find out that Ellie was asked to join her school’s Connection Club, which is made up of two students from every class who model good behavior.
Hearing that Ellie was recognized for being a caring person and a good friend was a big moment, Cyndole said. Ultimately, those are qualities they want most for their daughter.
“Her personality is larger than most people and it’s contagious,” she said. “We believe there is a reason for what she’s gone through. She’s going to change the world.”
Blessings through challenges
Ellie loves going to Girl Scouts, birthday parties, play dates with friends and activities at her church.
She wants to grow up to be a teacher and a mommy. And she doesn’t want her walker to be part of those plans.
So at the end of this summer, Ellie has decided to have surgery at Nemours Children’s Hospital to repair her club feet.
It will be her biggest surgery, since she decided to undergo a procedure to reconstruct her larynx and remove her trach several years ago.
The recovery and physical therapy afterward will be difficult, but Ellie has told her parents she wants it done and she’s ready.
The Messers’ faith is very important to them and they know they will have plenty of support from their church community, as well as Ellie’s school, LCBDD and their family and friends.
They also have a network of friends around the country on social media, who are impacted by diastrophic dysplasia and have helped them prepare for the surgery.
That sense of community makes a huge difference, Cyndole said.
“If we hadn’t been taken on this journey with Ellie, there’s so many people we never would have met,” she said. “Sometimes, you think life is going to go a certain way and when it doesn’t, there can be such massive blessings that come out of it.”