El Dorado child named Arkansas Children’s Foundation ambassador

After a life-altering diagnosis, the Parker family leaned on Arkansas Children’s Hospital throughout Emmalou’s life.

Dr. Suzanne Parker, Emmalou’s mother, said her daughter was diagnosed with Pierre Robin sequence at birth. The birth defect affects the development of the jaw, tongue, airway and roof of the mouth. A combination of these “can lead to difficulty breathing and problems with eating early in life,” according to the Genetic and Rare Diseases Information Center.

“Her chin was way far back, her tongue was oversized, she had a cleft palate, she couldn’t breathe and she had to be airlifted to Children’s. She was there a couple of months,” the mother said.

Emmalou’s parents were taken by surprise but because of the help and specialized care of Arkansas Children’s Hospital, Parker said she’s thankful.

“Sometimes that doesn’t bring out the best in you as an individual when your child’s sick, you’re helpless and you can’t do anything,” she said. "The people at Children’s were understanding, patient (and) kind. They told us to never give up. There was a time where I thought she wouldn’t talk or walk and now she’s making the honor roll, dancing and playing soccer. If God didn’t lead us to Children’s, I wouldn’t have her.”

The first year of Emmalou’s life was plagued with surgeries and trips from El Dorado to Little Rock, Suzanne Parker said.

“She had numerous surgeries to lengthen her jaw. She had to be intubated. She had blood transfusions. She had a stomach tube because she couldn’t eat. We were there that first year almost all of the time,” she said.

Every year since then, Emmalou has undergone at least one surgery at Arkansas Children’s Hospital, but with time her experiences “are not so bad.”

“She’s always known … There was a point when she was younger that she had so many surgeries in a row that we went into the PICU (pediatric intensive care unit) and the nurse met me and said ‘Mrs. Parker, you remember where everything’s at, right?'”

As her teen years draw near, she visits the pediatric care facility for dental work that could range from getting a tooth removed or adjusting braces, her mother said.

“With her birth defect, she’s missing a lot of teeth and some of her teeth came in wrong places,” she said. “They told us a few months ago when we went she’ll end up having to have her jaw rebroken again. We’ll have to go through that again, but they’ll do that when she gets to be a teenager, which will be in a couple of years.”

Emmalou volunteers with her family through Circle of Friends and does her fair share in raising awareness of the specialized care provided at the state’s only pediatric hospital system. She told her story during the organization’s annual Radiothon where they raised more than $25,000, her mother said.

She also tells her story to quell the inquiring minds of her classmates, Emmalou Parker said.

“People will sometimes just walk up like, ‘Why do you have those scars?’ and I’d just have to tell them,” she said.

Her mother said, “When she was little, her daddy would tell people that she was in a sword fight and she won.”

The Arkansas Children’s Foundation fundraising group Circle of Friends was initially known as Teamwork Increases Growth and Sharing. The local chapter was disbanded years ago and reorganized under the new name “when a group of families wanted to give back to Arkansas Children’s Hospital,” according to a previous News-Times report.

“My husband and I owe Children’s a lot … Because we owe Children’s so much, Daryl and I decided to contact Children’s to see what we can do. We were wanting to just do the Glow 5K, but it ended up turning into starting Circle of Friends again and we’ve enjoyed it. We owe almost everything we have to Children’s.”

Public relations coordinator Ashley Leopoulous said Emmalou’s been named an ambassador for the Arkansas Children’s Foundation and will have a feature page on the organization’s website.

“I go to multiple fundraising events that are in Union County. People come and she tells my story. They donate money because they’re inspired I guess, so then they’ll tell their family about Arkansas Children’s Hospital and it just kind of spreads around,” Emmalou said.

In her spare time, Emmalou likes to cook, dance, participate in gymnastics, spend time with family and watch movies on Netflix. When she grows up, she wants to become a veterinarian, like her mother, or a teacher, she said.

Because several community members have a connection to Children’s, Circle of Friends’ membership flourished during its inception in 2013, Suzanne Parker said.

“When we first started we had a lot of volunteers and now we would love for people to come to our membership drives so we can get more members and have more help for the Glow 5K and other fundraisers that we have going on,” the veterinarian said.

Circle of Friends’ next fundraiser is Kids Caring 4 Kids, where school children can pitch in by purchasing winter-themed cardstock to display in the hallways, Suzanne Parker said.

“(It) teaches the healthy children that it’s a good thing to give back because our health can be taken for granted. Something can happen when you least expected because we thought our baby was going to be healthy and she wasn’t,” the mother said.

Emmalou said, “I ended up being perfect.”

“You were perfect, just like God wanted you,” her mother answered.

For more information about Circle of Friends, go to the group’s Facebook page, Circle of Friends Union County. To donate, visit giving.archildrens.org or call 800-880-7491.

Brittany Williams may be reached at 870-862-6611 or [email protected]. Follow her on Twitter and like her on Facebook @BWilliamsEDNT for updates on Union County school news.