TAMPA, Fla. — Friedreich’s Ataxia is a rare and progressive disease that primarily affects the nervous system and heart.
For many, they don’t know they have it until they begin to lose coordination and muscle strength. It often leads to difficulty walking, slurred speech, and other debilitating symptoms.
“I maybe wasn't as fast as the other kids, and I maybe couldn't hit the ball right on spot as well as the other kids,” explained Jake Juip.
Jake couldn’t play T-Ball like his buddies and didn’t know why. But after numerous tests, he was finally diagnosed with Friedreich’s Ataxia.
“Once I learned what it was, it gave me a lot of resilience. And I found a lot of strength in myself to go forward and to tackle the challenges that come with FA as strong as possible,” said Jake.
“I was diagnosed when I had no symptoms. So, it was only later, about two or three years later, that I started having symptoms,” said Claire Juip.
Claire is Jake’s sister and also has FA. She said simple daily tasks can be difficult.
“Putting on my necklace, tying my shoes, cutting my food, getting in and out of the car. But luckily, I have a great family and great support system, who's always willing to help me with those things,” said Claire.
Jake also faces daily challenges.
“This morning, when I was getting out of bed, I didn't make it to my wheelchair, and I fell down. And it took me a while to get back up. And while that might seem simple to a lot of people, it's really arduous for me. And it takes a lot of energy and a lot of strength to get back up. But I always make sure that I do,” explained Jake.
Randy and Maureen Juip are Jake and Claire’s parents. Following Jake’s diagnosis, they wanted to be proactive, knowing FA was genetic.
“From the start, you have to accept that this is something you can't control. You're not going to have control over it. And once you accept that, you start to think about what you can have control over, what you can have a positive impact on,” said Randy.
“I think I was still in initial shock from Jake's diagnosis, and we talked a lot about it, and decided to test the other four kids. And in that clinic visit, they tested for reflexes, and Claire didn't have reflexes at the knee, which was really her only clinical symptom at all,” said Maureen.
But after Claire tested positive for FA, knowing two of their five children would face challenges became overwhelming.
“This disease is awful. It's horrible. It is daunting and it is crushing. But if that's the day that you wake up to over and over and over again, that's the day you're going to have. And I feel like I owe it to you, and I owe it to the kids, and I owe it to this community to at least, at least try. Let's try to do something,” explained Randy.
That’s when they decided to get involved in Friedreich’s Ataxia Research Alliance, or FARA, and to learn as much as possible.
“Life has got to be about more than what happens to you. I think you really look at it as to how you're going to respond and what you're going to do. And participating in these clinical trials and engaging in research and engaging with FARA and fundraising and really engaging this community has been great for us,” said Randy.
Claire and Jake are also grateful they can lean on their three other siblings.
“Just being there, lending an ear whenever I need to talk or laughing earnestly at my jokes. Being there as a friend that I can always count on,” said Jake.
“They're always reliable. I can always call to them and say, 'Hey, can you help me with this?' And they're always there,” said Claire.
And mom and dad definitely notice.
“They're there to hold the door. They're there to put the walker in the car. They're there to give them an elbow and in a way that, you know, the kids don't like to take help, really, from people that they don't know. But they are always the siblings are always there, and Jake and Claire are always willing to take their help, which is really a beautiful thing,” said Maureen.
But Jake doesn’t let FA slow him down. His impressive willpower always prevails.
“I have a lot of goals in life that I want to do no matter what comes my way, be it FA or anything else, and I just keep on going,” explained Jake.
Claire has big career goals as well.
“I've done a lot of clinical trials throughout my FA journey, and I decided that in the future, whether FA is cured or not, I would love to be a part of helping cure a disease,” said Claire.
Their parents could not be prouder.
“They are so incredibly resilient and optimistic. And they face the day with such a smile and such an exuberance and charisma. It's really remarkable how they keep going forward,” said Maureen.
But if you have a family member who's been newly diagnosed with Freidriech’s Ataxia, Randy has this advice.
“Educate yourself about the disease and learn what the power of community is, because I don't think anybody, I don't think anybody can get through this alone,” said Randy.
Both Jake and Claire are heading off to college. Jake is now a sophomore, and Claire will be a freshman. Both have learned how to live independently and are excited about the future.
This year, the FARA Energy Ball raises money for FA research, clinical trials, and eventually a cure.
This year’s gala is on Saturday, Sept. 27, from 6 to 11 p.m. at The Tampa Marriott Water Street Hotel.
If you are interested in attending the gala or donating to nonprofits, you can click here to learn more.
Share Your Story with Wendy
Tampa Bay 28 Anchor Wendy Ryan is dedicated to helping our neighbors navigate the important topic of mental health. For years, she’s been connecting people to resources, listening to their challenges, and sharing their stories to decrease the stigma. You can connect with Wendy by using the form below.
.
Build-to-rent boom in Florida: The apartment alternative?
As housing costs continue to squeeze Florida families, a growing trend is offering renters an alternative to apartment living without the financial burden of homeownership: build-to-rent single-family communities.
