Ella Rose's Story
From the time Ella Rose Diseny was three weeks old, she was plagued with constant respiratory issues. During the next six months, Ella Rose’s parents, Jordan and Ryan, were constantly at the pediatrician’s office—hoping to find an answer to why their daughter was always so sick. In September 2013, The Disney's got their answer, but it certainly wasn’t what they expected.
“We were at Children’s Hospital at Erlanger because Ella Rose couldn’t breathe, and I was exhausted from being there all night,” Jordan says. “I remember thinking the doctors were going to tell us she had pneumonia—not anything like cancer.”
Ella Rose, then only 6 months old, was diagnosed with Stage II neuroblastoma that was located in her left lung, aorta, and spine. Until that autumn day, Jordan and Ryan had never heard of neuroblastoma, and they were terrified for their daughter and the long and difficult journey they knew she would have to make.
“The hardest part was understanding that we had to put all our trust into this team of doctors,” Jordan says. “She was so little and innocent, and she was about to go through something that we as adults hadn’t even been through.”
Responding During a Time of Confusion
While Jordan and Ryan hadn’t been through having a child with neuroblastoma, they quickly met several people who had. Wendy Ransom, founder and president of Emily’s Power for a Cure, quickly met with the Disney family.
“Wendy was the first person we met. She stopped by in all the craziness and offered her hand to us—making sure we had meals and offering support,” Jordan says. “At the time, I didn’t know her story, but I found it out shortly after that. It just amazed me how quick she was to respond to us in our time of confusion.”
Wendy and the resources of Emily’s Power for a Cure were there for the Disney family when just a month after her diagnosis, Ella Rose underwent surgery to remove the largest part of the tumor on her left lung. Because of the remainder of the tumor’s location on her spine, doctors determined it was too risky to remove it. Now, Ella Rose continues to have scans every three months to monitor the remaining tumor. The Disney family knows they can call on Emily’s Power for a Cure any time a need arises.
“Emily’s Power for a Cure helped me talk out the frustration and brought us a community of people who had been where we were,” Jordan says. “We know we aren’t alone, and it’s nice to know that.”
Today, Jordan says Ella Rose is a vibrant, rambunctious little explorer. She loves coloring and making messes, and loves playing with her older sister, Lily Moon.
“If it weren’t for her scars and testing every three months, you wouldn't know what she has been through,” Jordan says. “She is doing wonderfully, and I couldn't have asked for a better little hero!”