Last year, Michal and Eva Bednarik started Slovakia’s first ever Fragile X family organisation. Back then, the Bednariks knew no other families raising children with an FX diagnosis.Today, they have helped multiple families across Slovakia with their FXS journey and found their own purpose along the way. FraXI is grateful to Michal and Eva for sharing their story with us and for drawing our attention to something that we rarely talk about when it comes to life after receiving a FXS diagnosis- loneliness. 

The path to diagnosing FXS in their sons was not easy for Michal and Eva. They began to notice that Šimonko, their firstborn, was not developing at the same rate as other babies his age, and so they went to a neurologist. At first, the suspicion was autism, but when he was a year and a half old Šimonko and his parents were directed to a genetic testing. Eva was already pregnant with their second son Miško. The wait that followed was the most difficult and stressful six months of the Bednariks’ lives.  

After several delays and disappointments, the Bednariks were able to receive a FXS diagnosis for their two boys- Šimonko with the full mutation and Miško on the borderline. Receiving a diagnosis for a condition they knew nothing about was emotionally brutal, but nothing could prepare Michal and Eva for the isolation that followed. For the first time, the Bednariks, who always had something exciting happening in their lives, felt like there was nothing out there for them. Michal and Eva felt trapped in a bubble of loneliness. They knew absolutely no other family in Slovakia that was raising a child with FXS, and to make matters worse, the lack of awareness in practitioners about the condition made it almost impossible for them to find an external support system. “Loneliness is dangerous,” reflects Michal. “It can lead you to make horrible decisions because you are scared.”

No one talks about how isolating it can be to receive the news that a loved one has a rare condition. Very few clinics around the world are prepared to give parents the emotional support they need after a diagnosis, and even fewer are ready to offer advice on self-care. “Learning how to be okay so that our sons could be okay was the biggest challenge for me and Eva”, remembers Michal. “No one else knew or understood what we were going through. We only had each other.” 

Eventually, Eva and Michal decided that the key to defeating loneliness was to find other families with FXS. “We did not want anyone to go through what we were going through. We wanted more families like us to know that we are here for them, and that we can do this together.” Thus, they began the Slovakian Civic Association for Fragile X, and discovered that they were not alone at all. Fast forward a year later, their organisation is now part of the FraXI family. 

“When loneliness comes for you, courage is your best friend,” says Michal. “We needed to be brave and fearless for our sons. We turned our bubble of loneliness into a circle of love. We want to find more families like ours so that we can all support each other in our journeys.If we’re going to be lonely, then we might as well be lonely together!”

When things got better, Šimonko and Miško discovered that there was a whole world out there waiting for them. Tucked into bike trailers behind their parents’ bicycles, Šimonko and Miško are exploring the world on wheels. “In front, we are in control, and we are in a sense driving our family through all these beautiful paths. And when we look back we can see our boys laughing and enjoying the world around them. It’s our favourite thing to do!”

Michal’s biggest dream for 2026 is to transform his family’s love for cycling adventures into a mission to raise awareness about FXS. The Bednariks are gearing up for a three-day cycling trip along the Danube this summer, and they hope their idea will spark inspiration in other families with children living with intellectual disabilities and neurodevelopmental conditions. Michal and Eva have three bike trailers which they loan out to similar families in Slovakia free of charge. “Here in Slovakia, money can be a challenge. An honest thank you and a smile are more than enough for us!” says Michal. 

EURORDIS has developed a resource to help those living with a rare condition and their families. Please see the Zihinsel Olarak Sağlıklı Araç Kiti for resources on how to look after yourself. If there is not a fragile x support group in your country, please reach out to FraXI and we can help you start one.