Local girl dreams big, finds hope after rare disease diagnosis

DUNEDIN, Fla. — Isabella Anna Wojtkowski was born a healthy girl with a big smile and bright eyes that could take on the world.

“She was a perfect baby, she hit all her milestones, started talking early, she was perfect,” said Jo Wojtkowski, Isabella’s mother.

Jo and Renek Wojtkowski are Isabella’s parents and are extremely proud of her.

“Isabella is a wonderful child. She is so beautiful. It is creative. He is extremely smart. She is very emotionally intelligent and has such a beautiful soul,” said Jo Wojtkowski.

“He’s funny. He loves telling jokes and creating stories. And that’s been one of her characteristics since she started talking,” said Renek Wojtkowski, Isabella’s father.

But when she was 4 years old, Isabella’s health began to change.

“He caught the virus and it took a long time to recover. And after that he had difficulty walking. His muscles were tense and it was very painful. So this was the first time something like this happened. And after that he never fully recovered from that,” Renek explained.

So her family took Isabella to many doctors who performed many tests, but nothing was found. It was said that he would soon become stronger; but a year later Isabella’s physical difficulties appeared to be worsening.

“We started to notice that he was becoming clumsy, tripping and falling frequently. “He was having trouble walking in a straight line, he was stumbling and was really struggling to get around,” Jo explained.

Despite countless specialists and tests, doctors still told Isabella “everything is fine.” Until I started having chest pains a year ago.

“The pains were very intense. And one night before I went to sleep, I witnessed one of those pains. And it was really like about 10 seconds of intense pain,” Renek said.

His family took him to the emergency room, where he 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 problems might be related. They suggested he undergo genetic screening at USF.

“We had genetic testing. It was the end of October and within a month we received the diagnosis of Friedrich’s Ataxia,” said Jo.

Friedrich Ataxia, or FA, is a rare, inherited disease that causes progressive damage to the nervous system.

Although they were relieved to finally be diagnosed, it wasn’t easy for Jo and Renek to tell their daughter.

“His first reaction was: ‘So it’s my fault, right?’ And obviously we said, ‘No, it’s not your fault.’ It’s something you’re born with. Now that we know, we can figure out how to deal with this, how to make this better for you,” Renek said.

ABC Action News anchor Wendy Ryan recently met Isabella, who is chatty, funny and mature for her age.

“I love going to the pool. I love cuddling my dog, Jasper. He’s so cute. I also love relaxing in my room, dancing, and having sleepovers,” said Isabella.

Isabella also explained to Ryan the help he needed navigating the school.

“Miss Renyano and Miss Holly usually hold my hand. And during layoffs, Mia, one of my friends, and Gia, one of my friends, usually hold both my hands and kind of help me balance,” Isabella explained.

Isabella is also aware of her limits due to her heart condition.

“My heart muscle is bigger, one of them. So if I do too much physical activity, my chest starts to hurt. I have a heart attack and have to lie down,” said Isabella.

The 4th grade student also shared with Ryan the different therapies he went to.

“In Physical Therapy you do physical things. In Occupational Therapy, you write and do things for your hands. If you do Speech Therapy they can help you say English words,” explained Isabella.

And he completely understands his diagnosis.

“Now that you’re sure what’s going on, how do you feel?” asked Ryan.

“I feel very sad,” Isabella replied.

“Why are you feeling sad?” asked Ryan

“Because I don’t want to have FA. “I want to be a normal person,” Isabella explained.

But this kid is so grateful for the support he gets from everyone.

“There’s one more thing I want to say. Thank you to everyone who has helped me over the last few years,” said Isabella.

Isabella’s parents have big dreams for their special daughter.

“I have no doubt that his life will be fulfilled and he will do anything he wants to do as long as he is willing to work for it,” Renek said.

“He has so much talent and we want to make sure he can live the full and amazing life he deserves,” Jo said.

If you want to help Isabella or others with Friedreich’s Ataxia, the annual Fara Energy Ball is being held on December 6th at the JW Marriott on Water Street.

You can learn more about Fara Energy Ball Here.