News & Events

Pleasant View 8-year-old with spina bifida needs a new set of wheels

May 22, 2017
Pleasant View 8-year-old with spina bifida needs a new set of wheels

Story by JANAE FRANCIS • Photos by SARAH WELLIVER • Standard-Examiner staff

PLEASANT VIEW — Just reaching the age of 8 was a miracle of sorts for Emylie Parker.

Emylie was born with spina bifida, a birth defect that occurs when an infant’s developing spine fails to close properly.

When she was just a few weeks old, her parents were given the choice of having an operation for a tracheotomy, a permanent hole in her throat allowing her to breathe but limiting her to feeding tubes, or taking her home to die.

They chose life.

Story continues below photo. 

Emylie Parker, who was born with spina bifida, lies in a hospital bed as a baby. Now 8, Emylie and her family are hoping the community will help them raise $70,000 for a van capable of transporting her with her electric wheelchair. Photo supplied/Parker family

“Melanie and Dave (her parents) felt so strong that she should live,” said Melanie Parker’s cousin, Anna Horne, of South Weber. “It was so scary for Melanie when she realized her daughter would have spina bifida.”

Because Emylie’s medical situation is unique, Horne said, no one can predict her future health or her life expectancy.

In the years since Emylie was born, Horne said she’s been amazed to see the growth among all members of the Pleasant View family.

Even though Emylie’s doctors and parents wondered if she would survive on dozens of occasions, she’s pulled through, Horne said.

Many say they’ve been inspired to see a girl half the size of children her age grow and succeed despite a limited capacity for moving and learning.

Now, the community is reaching out to help the family buy a van capable of transporting her electric wheelchair to activities outside of school hours. Fundraisers are collecting money for the effort.

Story continues below photo. 

David Parker, left, shares a moment with daughter Emylie Parker, 8, inside the riding arena Tuesday, May 2, 2017, at Golden Spike Event Center in Ogden. The family was there for Emylie’s riding lessons with Freedom Riders, a local nonprofit for children with disabilities.

One person who sees the goodness surrounding Emylie is her third-grade teacher at Majestic Elementary School. Nichole Chatfield believes that, with her tolerant attitude, Emylie has the ability to motivate her whole classroom to do better.

“I’ve been a teacher for 10 years, and I’ve never had anyone like her in my classroom,” Chatfield said. “She’s everything I would hope my own daughters could become.”

With limited use of her lower body, and breathing and circulation issues that require assistance from trained nurses and her parents, Chatfield said, Emylie never lets her physical limitations stop her from being as chatty and spunky as any other 8-year-old.

Emylie speaks with a quiet voice that sometimes requires interpretation by those who are accustomed to her raspy sounds.

“They told us she wouldn’t be able to talk,” said Melanie Parker. “We started out learning sign language. Little by little, she learned how to talk.”

With her joy, her drive and her efforts, Chatfield said Emylie is “one in two million” who inspires others to be their best selves.

“It’s really hard to complain and get down on yourself when you are around her,” Chatfield said. “When she is giving her all, it makes you want to do that, too.”

Chatfield sees how Emylie’s contagious smile, caring personality and love for playing games creates a better environment for the other students. She said she’s seen students run to open doors for Emylie and get things for her.

Story continues below photo. 

Emylie Parker, 8, chats with bus driver Kim Whimpey as her wheel chair is lowered Tuesday, May 2, 2017, outside her home in Pleasant View. Diagnosed with spina bifida and Arnold-Chiari malformation at birth, Emylie relies on a trach, vent and a feeding tube to live.

“You look at this little girl that has every obstacle in front of her and she can smile,” Chatfield said. “Things don’t come easily to her. … It’s nice for the other kids to see her and work with her.”

Melanie Parker believes the world is a better place because of her daughter: “Like everyone, she has a divine purpose. I love having a front row seat to that. She just makes people smile. It’s so great to see how just her being her teaches people’s hearts.”

One of Parker’s favorite moments occurred during recess when some other students were pushing and pulling Emylie through a playground tube.

“It’s so cute to see them willing to help her,” Parker said. “It’s fun to hear stories of how kids interact with her.”

Equipped with an electric wheelchair that is transported with Emylie by the Weber School District between her school and home, Horne said, Emylie interacts with her peers at her most confident self. She is able to raise and lower herself to the eye levels of her classmates, either standing or sitting.

“She is 100 percent there and mentally aware of her age and what her friends and peers are doing,” Horne said. “The chair gives her some of that freedom and ability to interact with them more.”

Horne said Emylie is a much different person when she is forced to use a hand-operated wheelchair or to be carried around by her parents.

Story continues below photo. 

Melanie Parker and her children Elianna, right, 14, Michael, 3, left, Elizabeth, 10, top center, and Emylie, 8, bottom center, pile out of their rental car Tuesday, May 2, 2017, outside the riding arena at Golden Spike Events Center in Ogden. The family hopes a GoFundMe campaign will help pay for a van equipped to transport Emylie’s power wheelchair, which weighs 250 pounds on its own, Parker said. “Her ventilator, suction machine, supply bags and O2 monitor and tank weigh another 45 pounds,” she said.

“When she’s stuck on the floor or has to be carried around, it changes the way she interacts and how she is acting,” Horne said. “It is amazing to see just how different that chair makes her.”

Her electric wheelchair is equipped to transport all of her needed supplies. But her family cannot afford the $70,000 they need to purchase a suitably equipped vehicle to ferry her and the chair around the community.

Their situation was amplified  April 21 when another vehicle pulled out in front of theirs, causing enough damage to their smaller-sized van that investigators deemed it a total loss.

Even when they had that vehicle, Parker said, the family could transport only a manual wheelchair. That means Parker has to carry all of her daughter’s medical equipment. The situation is difficult when attending multiple appointments on several floors at the hospital, she said.

Parker said she’s not complaining about her own trials. She just wants a better life for her daughter.

With a middle name of Faith, Emylie has carried out her mission well, Parker said. “Her middle name is a gentle reminder from God — just have faith and everything will work out,” she said.

“She always amazes me how she handles everything she goes through,” Parker said.

“If she does complain, we know she really is in a lot of pain or discomfort. She helps us see the joy in the small things.”

Story continues below photo. 

Elizabeth Parker, 10, right, holds up her little brother Michael 3, as they watch a video with sister Emylie, 8, left, and their mother Melanie Parker Tuesday, May 2, 2017, at their home in Pleasant View.

Emylie’s sister, Elizabeth, 10, said she has a personal reason for wanting a van for her sister. Currently, Emylie’s bus doesn’t get to the school in time for early morning choir practice. Elizabeth said she would enjoy having her sister join her in singing at school performances.

Emylie’s other sister, Elianna, 14, said being able to take Emylie more places would give more people the chance to meet her.

“She’s a great role model because of how strong she is,” Elianna said. “She’s endured way more than any of us combined. She has the best attitude. She’s definitely helped me to be able to interact with many different people.”

Elianna and Elizabeth volunteer with the Freedom Riders, a nonprofit organization that provides horse therapy for kids with special needs.

The two said the growth they’ve experienced through that organization wouldn’t have been possible without their sister.

The family is hoping the community will rally around them now.

People may donate to Emylie’s GoFundMe page by visiting gofundme.com/emylieparker.

There’s also an upcoming community fundraiser: From 4:30 p.m. to 7:30 p.m. Thursday, June 15, a food truck, carnival and bake sale event will take place at Majestic Elementary School, 425 W. 2550 North in Harrisville. A portion of sales will go toward the new van.

You can reach reporter JaNae Francis at jfrancis@standard.net or 801-625-4228. Follow her on Twitter at @JaNaeFrancisSE or like her on Facebook at facebook.com/SEJaNaeFrancis.