Zionsville — The road from Zionsville to Walt Disney World is more than 1,000 miles long. For the Reidlinger family, the road has been much longer.
Samantha Reidlinger, 6-year-old daughter of Lora Snider and Tom Reidlinger, was diagnosed with a mitochondrial disease, Complex 1 deficiency, after more than four years of testing at Peyton Manning’s Children’s Hospital at St. Vincent.
The disease is a progressive degenerative disorder that affects organs and tissues in the brain, heart, liver and other areas that require high energy levels.
I will fight your fight.
Snider said she and her husband started noticing something was wrong with Samantha very early in her life.
“At about three months (of age), we started noticing some issues,” she said. “She was having 21 to 25 seizures per day, and we weren’t aware of it until we took her to the doctor.”
Doctors determined that Samantha was missing her corpus callosum, the part of the brain that transfers information from the left to the right side.
“We couldn’t figure out what else was going on,” Snider said. “From six months (old) and on, it was just kind of the same thing over and over; she kept getting pneumonia over and over and having all kinds of issues.”
Samantha was having several breathing problems. Then, in May, Samantha stopped breathing.
“We rushed her to the hospital,” Snider said. “They had some trouble getting her back, but they eventually did. They did an emergency trach replacement in June.”
Snider said the trach replacement has helped her breathing, but Samantha still gets pneumonia.
“She’ll get pneumonia at least once a month,” she said. “There’s no filter like there should be; air just goes straight into her lungs.”
I will hold you tight.
The Make A Wish Foundation heard the little girl’s story and granted her wish to go to Disney World.
“I was completely shocked when I got the call,” Snider said. “I just kept saying ‘Are you kidding me?’ over and over.”
Snider’s sister, Nicole Ritchie, was the one that told Make A Wish about everything the family was going through.
“It’s something we’ve wanted to happen for a while,” Ritchie said. “We thought she deserves it more than anything else in the world. For them, it’s all hospital stays, doctors and medicine; they don’t have any downtime or time to relax for a little while.”
Snider said the trip would be a dream since Samantha requires a lot of machinery and a nurse, who is at their house for seven hours a day Monday through Friday.
“I thought we would never be able to make a trip like that or travel out of the state of Indiana,” she said. “We don’t ever get to go anywhere.”
Snider did have some reservations about making the trip.
“I was very nervous because we’ve never been more than an hour away from home,” she said. “I do know they have a hospital nearby; they have medical staff and a doctor on call 24 hours a day. I was very pleased with that. She can’t sleep in a normal bed, but they are able to accommodate her much better than most places.”
Like most girl’s her age, Samantha loves Disney princesses, especially Tinkerbell.
“She thinks she is Tinkerbell,” Snider said. “She has a lot of trouble communicating, but if you show her a picture of Tink, she’ll tap herself saying ‘That’s me.’”
Samantha will have the opportunity to finally meet her idol and even have a party with Tinkerbell while visiting Disney World.
The other thing that Samantha loves is music, Snider said.
“She doesn’t care what kind of music is on as long as the radio is on,” she said. “As long as the radio is on, she’s content. If we have it off, she’ll tell us.”
Snider said one song in particular helped the family through difficult times.
“We had a hard time with the trach replacement surgery,” she said. “We used to always play Rascal Flatts’ song I Won’t Let Go. Whenever they put her into a room (after the surgery), we told them there had to be a radio. When they plugged in the radio, that song was on. She was extremely sedated, but she opened her eyes and looked at me when she heard the song. That told me everything was going to be fine.”
And I won’t let go.
Ritchie said life for the family has changed drastically since the trach surgery.
“Before the surgery, (Lora) kept thinking there’s no way I can do this,” she said. “She’s learned to accommodate with the situation very well. Now she could do an emergency trach replacement with her eyes closed, one hand tied behind her back and dancing around to the best of the 80s.”
Snider said more than anything, she wants Samantha to live her life like any other kid.
“I would love for her to touch sand or see Tinkerbell,” she said. “My goal in life for her is to live a very happy life. I constantly tell her ‘You can do anything you want to, just do it’.”
The family will be taking the trip on Friday, April 13, but there is a special ceremony planned to serve as a send-off at 2 p.m. Sunday, March 18, in Lion’s Park.