No parent wants to see their child suffer, especially when the child is in dire need of something like an organ transplant. Rachel Summerlin has already been through that pain with her daughter Emilie, but 10 years later, the Summerlin family is again searching for a heart.
Illness
Emilie Raley is a fourth-grader at Owens Elementary School. Her mother said Emilie is a typical kid — she loves to run, play with her friends and be at school. Right now, though, Emilie is spending her days at Children’s Hospital of Alabama, waiting for a miracle.
“She’s had a lot of battles these last 10-and-a-half years,” Rachel Summerlin told The News Courier. “It’s just one day at a time and I’m thankful for every day.”
Emilie was born in 2004 with a severe heart condition called cardiomyopathy. Her small heart was badly damaged, but it worked up until around her first birthday, when a bout with flu sickened the child to the point of being placed on life support for several days. Doctors found her a heart and brought Emilie back to her family. She grew into a person wise beyond her years.
“She has an old soul,” Rachel said of her daughter. “She doesn’t have a mean bone in her body. She sees the beauty in small things most people overlook.”
But in the back of her mind, Rachel knew there was always the possibility of the transplant failing over time. She likened her concerns to a game of Russian roulette, because she’s aware of other pediatric transplant patients that don’t reach Emilie’s age because the organ stiffens up and other complications develop. Even though there was a small chance of that happening, it still existed.
“After 10 years, you worry,” Rachel said. “We knew this was a possibility — we didn’t know it would be this soon.”
Relapse
Emilie collapsed on Aug. 27 — not long after the start of her fourth-grade year. She was rushed to Birmingham where Rachel, her husband Ryan and son Noah learned Emilie would need a second heart transplant. And her failing heart impeded the development of protein in her body to the point that she also needs a kidney transplant. Rachel said Emilie is at the top of the regional list for heart transplants and, if a kidney can’t be found, both Rachel and Ryan are donor matches.
Emilie hasn’t left the hospital since August and her family is right there with her. Ryan, Emilie’s stepdad, works at Steelcase and is spending time in between there and Birmingham to support Emilie, Noah and Rachel. Rachel said that even though she’s been dealing with Emilie’s condition for more than a decade, she feels ‘rusty’ to be back at the hospital and sleeping at Ronald McDonald House. Despite it all, Rachel said faith keeps her holding on.
“Honestly, I have faith that it’s going to be okay,” she said. “I’m looking forward to the transplant — I’m looking forward to being a family again. I miss her.”
Emilie is taking the news all in stride, Rachel said. She’s aware that she needs a new heart and kidney, but shares in Rachel’s hopeful outlook.
“She’s okay with it,” Rachel said. “She’s ready to be a kid again.”
Good neighbors
Emilie’s friends are waiting for her return, too. They’ve made cards and sent them to the hospital. The Owens community is organizing a fundraiser fun run for her.
The run is slated for 10 a.m. until noon at the Owens Elementary School walking track. The gymnasium would be the rain site. Admission and activities are free but chicken stew and other food will be for sale, as will T-shirts. Children can also play on inflatable slides and have their faces painted — all for Emilie.
“We are thankful that our community has come together,” Rachel said. “It’s put us in shock.”
For more information, contact Patricia Hatchett at 256-777-9265, Amy Abernathy at 256-614-5347 or Sueann Hobbs at 256-777-5920.