YUNYI DAI / NEXTGENRADIO
What is the meaning of
home?
Thomas Ouellette speaks with Katie Seeright, a mother of two who faces challenges in her home everyday. 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.
Lakeland mother helps daughter with rare disease feel at home
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KATIE:
My name is Katie Seeright. I am a stay at home mom with two kids: Adeline, age 6, and Oliver, age 5.
My 6-year-old is a special needs, very medically complex child.
Before Adeline was born, home was me and David. He’s a fire captain as well as a paramedic. And then when Adeline was born, it came to include her. And so, I mean, our house is our home, but it wouldn’t be a home without David, it wouldn’t be a home without Adeline, and now Oliver as well.
Adeline, when she was born, we very quickly found out that she was not a typical child. That she was special needs. And so we began lots of doctor’s appointments, lot of hospital stays. And so home also became a place where we were nervous. You know, we had just brought a new baby home. It was our first child and there was a lot of scary stuff happening and so there was also a lot of anxiety.
She was very tiny, she was 5 pounds, 5 ounces.Then she had an ultrasound of her head the following day and we started to hear some things about, you know, a cyst in her brain and some abnormalities. At eight days old, we were discharged from the NICU and went straight for our first neurology appointment, but our neurologist took one look at her MRI and it had so many abnormalities that matched up with criteria for Aicardi syndrome.
She also had detached retinas, her eyes were not fully formed, her optic nerves weren’t fully formed. Adeline had her first seizure at exactly 7 weeks old. That’s when we started lots of hospitalizations. In the beginning, it was like we got diagnosis after diagnosis. And it was hard. You know, you’re trying to enjoy your new baby, but getting a lot of bad news at the same time and not really sure what the future was going to hold for her.
“How about an ironworker? Firefighter, crime fighter, television script writer. Some folks make good picture framers. Some folks make good lion tamers. What do you think of that?”
It sometimes felt like home was being ripped out, I guess, a little bit from us, and what we expected it to be. It still was home, though.
“Tennis pro, optometrist, crossing guard podiatrist, chemist, lepidopterist?”
The hardest part of things when David isn’t here is usually if something out of the norm happens that I’m not expecting. It has its challenges, he is gone for 24 hours at a time, sometimes 48 if they have overtime.
This past summer, her leg broke and David was at work and that was a, that was a little bit more challenging cause we didn’t quite know what we were dealing with at first and it involved an ER visit and everything and it was an ordeal, even just changing her diaper. I mean, how we did everything changed, because her whole leg was in a cast.
Some things are different, even though it’s Christmas or New Year’s or anything, Adeline still needs medication first thing in the morning. You don’t get to sleep late. You still have to make her food, change diapers. Even just planning gifts. It’s hard to plan a gift for her and that can be a bittersweet thing because I love her and she’s sweet, but I don’t know what to give her for Christmas.
We could make a new home somewhere else if we had to, but it wouldn’t be a home if it wasn’t with David, Adeline, and Oliver. They’re what truly makes home home.
Katie and David Seeright read a Dr. Suess book to their daughter on Tuesday, Jan. 2, 2024. Because of Adeline’s condition, reading is one of the only activities the family can easily do together.
THOMAS OUELLETTE / NEXTGENRADIO
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.
A variety of syringes sit in a carefully labeled container. Katie and David administer about 15 doses of medication throughout the day to keep Adeline healthy.
THOMAS OUELLETTE / NEXTGENRADIO
“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.
Siblings Oliver and Adeline Seeright pose for a picture at the Light Up Bonnet Springs Park event in December 2023. The holiday-themed community event includes music, a snow machine and offers experiences for those with sensory sensitivities.
PHOTO COURTESY OF KATIE SEERIGHT
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.
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 Seeright logs on to the Aicardi Syndrome Facebook group, a virtual space that offers her support and community without leaving her home. Due to how uncommon Aicardi Syndrome is, the people in the private group are a select few that understand the ever-changing circumstances that accompany those affected by the disorder.
THOMAS OUELLETTE / NEXTGENRADIO
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.
In 2022, the Seeright family took a trip to Disney World through the Make-A-Wish Foundation. For the Seerights, something as simple as bringing Adeline to their backyard can be a challenge, but Katie says the additional planning for trips is important to them as a family. “Just because we have a special needs child doesn’t mean our life has to stop either.”
PHOTO COURTESY OF KATIE SEERIGHT
“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.”