Parents of local girl with rare syndrome hopes people will get to know others instead of judging
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POCATELLO — For 9-year-old Ellie Hollingshead feeling the acceptance of her peers is very important.
Like most of her fourth-grade peers, Ellie is happy, bright and has similar interests to most children her age.
But physically, Ellie is a little different than other children, which is something of a struggle in her life. Ellie was born with Pfeiffer syndrome, a rare genetic disorder that affects the whole body, but primarily facial features. At birth, usually, a baby’s skull is not fused so it can grow and expand, but Ellie’s bones were fused together, which caused a number of problems.
Her eyes are outside of her sockets, meaning they stick out and get bumped easily, and she can’t fully close her eyes. Due to her smaller auditory canal, she also has hearing aids and uses a CPAP machine to help her breathe easier while she sleeps.
“It’s hard not to stare (when) you see something different,” Ellie’s mom, Whitni admits. “Even when you’re prepared, sometimes you still stare and then you realize, ‘Oh my, I’m staring’ instead of trying to talk and find similarities.”
At three months old and then again at the age of one, doctors had to remove sections of Ellie’s skull and make it bigger to make room for her brain. Her dad, Ryan, says everything that somebody would expect to happen normally with growth, has to be done manually on Ellie.
While Ellie’s journey hasn’t been easy physically on her body, she’s also had challenges to overcome emotionally and mentally as well.
“We’ve definitely had kids on the playground say things like, ‘Oh, that’s the creepy lady. She’s going to be the monster and we’re going to run away from her,'” Ryan recalls. “That’s really hard for her to process and deal with.”
He says when someone sees somebody with a craniofacial difference, oftentimes they assume the person is extremely developmentally delayed — Ellie is not — and that’s equally as damaging as being made fun of.
“We definitely have the conversation quite a lot of that — you’re different, I’m different and God has made us all different,” Whitni explained. “Just because you look the way that you do doesn’t mean that on the inside it’s bad, or that someone else that looks really pretty, (they) might not be all that great on the inside.”
That’s a lesson Ryan and Whitni have tried to teach Ellie over the years. It’s something they hope she remembers as she undergoes another surgery in October, but this time to essentially give her a new face.
The goal with the surgery is for doctors to begin the process of moving Ellie’s midface forward. This will make it so Ellie’s eyes will be inside the sockets.
Ryan says doctors are going to break all of her bones at eye level to her ear so that her face is essentially “free-floating.” Then, they will insert a medical device that will basically hold a bone in place and screws will be attached to it. The screws will then be twisted each day to help move her face a little bit more forward.
“They’re trying to guess where her face will be when she’s done growing, and they’re just going to move it that far,” Ryan explained.
Whitni says this surgery isn’t about changing Ellie’s looks, instead, it’s to allow Ellie to live a more normal life.
Having a daughter with Pfeiffer syndrome has opened Ryan and Whitni’s eyes to the importance of taking the time to talk to people, rather than judge them.
“When you think of villains and movies, not all, but generally speaking, they’ve got some sort of scar to declare they’re the villain,” Ryan mentioned. “I get why that might be the case, it’s very easy to visually tell that. But we can’t apply that fantasy to real life.”
The couple encourages parents to explain to their children why people look the way they do, rather than thinking the best option is to silence them when they see something unfamiliar.
“It’s important to prep your children before the situation arrives,” Whitni says. “But even if the situation has already arrived, you can still prep your children for more situations because they’re going to come in contact with lots of different people, and that’s the neat thing about the world.”