NORTH LITTLE ROCK, Ark. – A young Arkansas girl born with a rare heart defect is now a heart of hope as her beat goes on.
Jerilyn and Kenny Wasson are Emma’s parents. They have been by her side every single day for more than 10 years have been grateful for every day they have been able to do so.
“She just kind of sings her way through life,” Jerilyn explained.
That bright hope is far from the worry these parents had in the earliest moments of their daughter’s life.
“They told us to go plan her funeral,” Jerilyn said. “Emma was not expected to live.”
Emma – just 10 years old – lives with the rarest of rare heart conditions.
“She is used to her life,” Jerilyn said. “Unfortunately, she is used to pain.”
Jerilyn said when Emma was born, she immediately turned blue and was found to have a heart murmur. Emma was rushed to Arkansas Children’s Hospital, where she would spend much of her childhood, coming in and out for treatments.
Emma was eventually found to have a combination of a genetic disorder called Turner Syndrome and then two congenital heart defects.
Jerilyn said only 1% of those with Turner Syndrome live to term. The congenital heart defect that Emma has is pulmonary atresia with intact vehicular septum, and only one in 100,000 with that defect live to term.
Survivors living into childhood, other than Emma, are even more rare.
“We have not been able to find anyone alive with those combinations,” Jerilyn said.
Emma is currently in school at Easter Seals, though she requires several daily medications and respiratory treatments. She is also on a feeding tube and has a caregiver who lives at the Wasson home.
Her parents say they have dedicated themselves not only to her but to being a voice for other families experiencing battles with their children.
“People have her sticker and her magnet up, and I’m like, ‘This is my kid,’’’ Kenny said.
You can find bumper stickers, magnets, and bracelets all over the country created to bring awareness to Emma and encourage people to pray for her. Her Facebook page, Totally Emma, has followers all around the world.
Her face is also on the side of Arkansas Children’s Hospital, right off the freeway. Additionally, she has a playground at Burns Park dedicated to her, called “One Heart.” It is an inclusive playground, meant to meet the needs of other kids with disabilities. Despite being hit by the recent March 31 tornado, it is resilient, like Emma, and is being repaired today.
“What it has taught me is that people are generally good,” Kenny said.
Her parents say instead of being angry at the world, they are grateful. Grateful to see people show up every single day for 10 years and beyond, all for their little girl. Emma Wasson.
“People come when you are born and when you die… to a funeral, right,” Kenny said. “But you do not get to experience that in a lifetime. We got to do that.”