DUNEDIN, Fla. — Isabella Anna Wojtkowski was born a healthy baby girl with a big smile and bright eyes to take on the world.
“She was a perfect baby, hit all her milestones, was an early talker, just perfect,” said Jo Wojtkowski, Isabella’s mom.
Jo and Renek Wojtkowski are Isabella’s parents and are extremely proud of her.
“Isabella is an amazing child. She is beautiful. She's creative. She's extremely smart. She's very emotionally intelligent and just a beautiful soul,” said Jo Wojtkowski.
“She's funny. She likes to crack jokes and create stories. And so that's one of her traits that it's been with her since she started to talk,” said Renek Wojtkowski, Isabella’s dad.
But at 4 years old, Isabella’s health took a turn.
“She got sick with the virus, and it took her a long time to recover. And she experienced, like, difficulty walking after that. Her muscles were tense, and it was just painful. So, this was the first time that something like that happened. And after that, she never, never fully recovered from it,” explained Renek.
So, her parents took Isabella to numerous doctors who did many tests, but nothing was found. They were told she’d get stronger in no time; however, a year later, Isabella’s physical challenges seemed to get worse.
“We started to notice that she was becoming clumsy, tripping over a lot, stumbling. She had a hard time walking in a straight line, staggering and just struggling really to get around,” explained Jo.
Despite countless specialists and tests, doctors still gave Isabella the “all clear.” That was until a year ago when she started to have chest pains.
“The pains were severe. And I witnessed one of those pains before she went to sleep one night. And it was really like about 10 seconds of intense pain,” said Renek.
Her parents rushed her to the ER, where she was diagnosed with a heart condition called Hypertrophic Cardiomyopathy, which is a thickening of the heart muscle.
A hospital doctor also believed Isabella’s heart and balance issues could be related. They recommended she go through genetic screening at USF.
“We got genetic testing done. That was the end of October, and then within a month, we had the diagnosis of Friedrich's Ataxia,” said Jo.
Friedrich’s Ataxia, or FA, is a rare, inherited disorder that causes progressive damage to the nervous system.
And despite feeling relieved to finally have a diagnosis, telling their daughter was not easy for Jo and Renek.
“Her first response was, ‘So it's not my fault?’ And obviously, we said, 'No, it's not your fault. It's something you were born with. And now that we know, we can figure out how to deal with it, how to make this better for you,'” said Renek.
ABC Action News anchor Wendy Ryan recently met with Isabella, who is talkative, funny, and mature for her age.
“I like to go in the pool. I like to snuggle with my dog, Jasper. He's very cute. I also like to relax in my room, and I like to dance and have sleepovers,” said Isabella.
Isabella also explained to Ryan the help she needs when walking around at school.
“Miss Renyano and Miss Holly, they usually hold my hand. And during dismissal, Mia, another one my friends, and Gia, another one of my friends, usually holds both of my hands and kind of like helps me balance,” explained Isabella.
And Isabella understands her limitations because of her heart condition.
“My heart muscle is bigger, one of them. So like, if I do too much physical activity, my chest kind of starts to hurt. And I get a heart attack, and I have to lie down,” said Isabella.
The 4th grader also shared the different therapies she goes to with Ryan.
“In Physical Therapy, you do physical stuff. In Occupational Therapy, you do writing, stuff for the hand. If you do Speech Therapy, they can like help you say words in English,” explained Isabella.
And she fully understands her diagnosis.
“Now that you know for sure what's going on, how do you feel?” asked Ryan.
“I feel very upset,” responded Isabella.
“Why do you feel upset?” asked Ryan
“Because I do not want to have FA. I want to be a normal person,” explained Isabella.
But this child is so appreciative of all the support she is receiving from everyone.
“One more thing I would like to say. Thank you for all the people, who have helped me in the past few years,” said Isabella.
And Isabella’s parents have big dreams for their special daughter.
“I have no doubt that her life will be fulfilled, and she will do whatever she wants to do as long as she's willing to work for it,” said Renek.
“She has so many talents, and we just want to make sure that she can live this full and brilliant life, which she deserves,” said Jo.
If you are interested in helping Isabella or others with Friedreich’s Ataxia, the annual Fara Energy Ball is being held on December 6 at the JW Marriott on Water Street.
You can learn more information about the Fara Energy Ball here.
