Emma’s dream trip
Make a Wish Foundation flying Marietta girl to Hawaii
Emma Rose Clatterbuck, 8, of Marietta, can’t speak in the traditional way, but she still says plenty.
Cuddling her Mickey Mouse pillow and grinning from ear to ear Thursday as those around her talked about an upcoming dream trip to Hawaii, her excitement was louder than words.
Like so many young girls, Emma has always been a fan of the ocean, water the Doodlebops and of course, Mickey Mouse. It’s what makes her different–a life-threatening genetic mutation–that qualified her for the Make-A-Wish Foundation trip to Aulani Disney World Resort in Ko Olina, Hawaii. The family leaves Sunday for their adventure.
Since 1980, the Make-A-Wish Foundation has been granting wishes of thousands of little boys and girls all over the United States. Although many children dream of going to Disney World or meeting their favorite Disney character or maybe even a WWE wrestler, some children don’t have a lifetime to make dreams become reality.
“She began having seizures when she was born,” said Emma’s mother, Jennifer Clatterbuck, 38. “We also noticed she wasn’t developing normally and that’s when we consulted a doctor.”
Emma has a rare genetic mutation of the gene STXBP1. It’s called Epileptic Encephalopathy and is a severe, rare form of epilepsy, caused by this mutation.
“This gene mutation wasn’t even discovered until 2010,” said Jennifer. “Emma was diagnosed when she was just 5 years old in 2013.”
Mutations are typically new in families and a single copy of the gene is enough to cause the disorder. The children may display some of these symptoms in varying severities: neonatal epilepsy, Global Delay– a condition that occurs during the developmental period of a child between birth and 18 years and is defined by the child being diagnosed with having a lower intellectual functioning than normal, cognitive impairment, autism, movement disorders and even Cerebral Palsy.
“At the beginning, Emma’s seizures were very hard to control,” said Jennifer. “They are controlled now but you never know when they could come back. Some may be so severe that the end result is sudden death.”
Clatterbuck, who also has two other children, Christian, 13, and Wyatt, 10, said she is looking forward to this opportunity to enjoy happy memories with her family.
“It took me awhile to be able to acknowledge I was receiving this trip from an organization that grants wishes to children who may not survive,” she said. “I wanted a chance to spend a week together where Emma would be truly happy. I don’t know if she realizes where she’s going yet.”
Due to her condition, she is unable to speak but her she expresses excitement through her body movements and facial expressions. According to Jennifer, Emma was kicking her legs and waving her arms when she received all her Mickey Mouse toys at the reveal party.
Jennifer said this wasn’t something she could afford as a single mother.
“All my kids will get a chance to be happy together with Emma,” she said. “I couldn’t be happier about it.”
They will be spending time near the ocean along with eating, playing games spending time in the company of Disney characters. Emma even gets a personal meet-and-greet with Mickey and Minnie Mouse while in Hawaii. Emma’s aunt and caregiver, Naomi Beals, 26, of Marietta will be joining Emma on their trip to Hawaii along with Emma’s two brothers and her mom.
“Emma picks up a lot on our energy and we’ve realized she relies on those people she trusts to know how to feel,” said Beals, who is not only Emma’s aunt but also her caregiver. “This is really neat to experience because she doesn’t know what to expect and won’t realize it until we get there.”
Beals asked her brother Christian what he is most excited about.
“Probably what the look on Emma’s face will be when we get there,” he said.
Although there isn’t any cure for Emma’s condition, therapy helps with her motor skills and speech skills. Emma is a student at Putnam Elementary School where she works on those skills.
“We do something called tummy time where Emma is propped up on her arms,” said Beals. “It helps strengthen her upper body. When we started she was doing about six minutes and now we are up to 11 and 12 minutes which is huge progress.”
Emma rides the bus every day to school and loves every second of school. She also enjoys dancing with Beals.
“She would much rather be doing something than just sitting inside,” said Beals.
Jennifer said she is so thankful for this opportunity.
“I was overwhelmed at the reveal party last Saturday,” she said. “I was very impressed with the support of local businesses that helped with this party.”
Domino’s Pizza, Edible Arrangements and Pepsi Company helped with the big party leading up to the big trip.
“When I picked our trip I wanted it to be somewhere Emma would want to go,” Jennifer said.
“If she could tell me, she’d want to go there. We are so excited to experience this with her.”
At a glance
About the Make-A-Wish Foundation:
¯The Make-A-Wish Foundation is a nonprofit organization that arranges experiences described as “wishes” to children with life-threatening medical conditions.
¯In order to qualify for a wish, the child must be between the ages of 3 and 17 years at the time of referral.
¯In 2016, there were 60 wishes granted to Ohio children.
¯Nationally, the Make-A-Wish Foundation has granted more than 180,000 wishes, and currently grants a wish every 40 minutes.
Source: Make-A-Wish Foundation.