Lakeland mother helps daughter with rare disease feel at home
What is the meaning of HOME?
In this project through Next Gen Radio -- a collaboration between NPR and member stations -- we highlight the experiences of people in the state of Florida.
Thomas Ouellette speaks with Katie Seeright, a mother of two who faces challenges in her home every day. In addition to raising a toddler, Katie’s 6-year-old daughter Adeline suffers from an incredibly rare disease called Aicardi syndrome that prevents her from being able to take care of herself. Katie is ready at all times for when her daughter needs her. Through it all, the Seeright family does everything they can to make a home despite the challenges.
Being a stay-at-home mom with two kids is challenging for any parent. But when one of them suffers from an incredibly rare disease and requires around-the-clock care, it’s up to Katie Seeright in Lakeland to overcome challenges and make her house a home.
Many people look fondly on their time at home with family and remember the feeling of relaxation, of fun, of finally being able to let their walls down. For Katie Seeright, getting to that point comes after a long day of administering medications, changing diapers, handling seizures and so much more.
Two years after marrying David, a Polk County firefighter/paramedic, the couple decided to have a child. About six months into Katie’s first pregnancy, doctors saw signs that there were going to be complications bringing their daughter to term.
Born a month early and weighing just five pounds and five ounces, the Seeright family welcomed their daughter Adeline into the world in the summer of 2017.
Within two weeks, they found themselves back at the hospital with a doctor telling them about a condition known as Aicardi syndrome. From there, it was one diagnosis after another: blindness, hip dysplasia, brain cysts, and seizures.
“We were told to look out for seizures, they typically would start between 3 and 6 months old,” said Katie. “Adeline had her first seizure at exactly 7 weeks old.”
The Seerights learned that their daughter would never be able to care for herself and would need around-the-clock care — but most importantly, all the love that parents can give.
The couple decided to have another child — a sibling and friend for Adeline. Oliver was born a year later.
Taking care of two children is a challenge, particularly with David’s job at the fire department, which takes him away for 24 to 48 hours at a time.
“Things always tend to happen when he is at work,” said Katie. “I get a lot more nervous. I don’t sleep quite as well. I’m a little more on edge, not knowing if something’s going to go wrong.”
When she is alone, it’s a balancing act: waking up early to give Adeline her medications, making Oliver’s breakfast and lunch, preparing him for school before taking Adeline to doctor’s appointments — all of these things pull Katie in many directions.
And then there are the medical issues that can’t be anticipated, starting with the 20 to 30 seizures a day Adeline experiences.
“Luckily, she does not lose her oxygen with those seizures,” said Katie. “We just have to keep an eye on her, make sure she’s in a good position.”
Six months ago, Katie was moving her daughter into a wheelchair when her left femur broke — something that’s common for someone with bones as weak as Adeline’s.
“It was an ordeal, even just changing her diaper, because her whole leg was in a cast, and it made it challenging, but we figured it out,” she said.
Katie found ways to help Adeline and even found some help for herself. One of the best is the Aicardi Syndrome Facebook group. The condition is incredibly rare, only affecting about 1,000 people in the U.S., so having others who know what they’re going through helps the Seerights feel like they aren’t alone.
Help also comes from the community, ranging from a GoFundMe campaign for a new van to donations of things like a travel wheelchair.
Despite the situation, Katie isn’t deterred, and fights everyday to give Adeline the love and happiness that any child her age should have.
“Some things are different, even though it’s Christmas or New Year’s or anything, Adeline still needs medication first thing in the morning. There is no sleeping in,” Katie said.
Even something as simple as opening a Christmas gift isn’t the same for Adeline.
“We can wrap paper around half of a book and kind of use her hand and have her open it, but we have to plan for that and make it a little different to make sure we include her with things,“ Katie said.
Everything they do requires more effort than the average home, but Katie never lets that get the best of her.
“I could take away this house, but I need my family with me. They’re my favorite people. I mean, Oliver can drive me nuts with his nonstop questions, and nonstop energy. Adeline is challenging, it makes me anxious, but I love them. David is my rock, and he’s my best friend, and he makes me laugh, and he supports me,” Katie said. “It wouldn’t be a home if it wasn’t with David, Adeline, and Oliver. They’re what truly make home home.”
Thomas Ouellette is a recent graduate of the University of South Florida. He loves bringing interesting stories to life from people you might not have heard of. He’s a freelance reporter for the Osceola News-Gazette and hopes to land a full-time reporting job. He previously interned for WUSF in Tampa.