“We’re sorry, but most of the children with INAD die before their 10th birthday...” We are fighting to ensure Julek undergoes gene therapy on time. Please join us in giving him a chance – help us prepare for the clinical trial!

Not long ago, we had normal lives. Julek was a happy, curious little boy. He was learning to walk, play, and laugh. There were no signs of the upcoming tragedy.

When Julek was about 1.5 years old, we noticed a change in his behavior, which really worried us. His gait became shaky, and he stopped reaching further milestones. It was hard for him to concentrate and connect with his peers. He started rehabilitation and different therapies, and underwent more examinations. Back then, we didn’t realize the regression wasn’t temporary, though...

After long-lasting tests, in August 2024, right before Julek’s third birthday, we received a diagnosis... Rare, terminal, inherited, neurodegenerative disorder - Infantile Neuroaxonal Dystrophy (INAD).

This disease allows one to enjoy childhood only for a short period of time. And then, it starts to take away the ability to walk, talk, see, eat, and finally... breathe. We learned that there’s no cure for it, and most of the children with INAD die before their 10th birthday. However, we’ve recently seen the light at the end of the tunnel!

Thanks to the year-long research at the UCL in the UK, and the determination of the American INADcure Foundation, gene therapy is being developed, which not only stops the progression of the disease but can also restore developmental milestones. In 2026, a clinical trial will begin, and taking part in it would be a great opportunity for Julek. We’re doing our best to keep Julek in the best shape so that he can live to experience the medical breakthrough!

Today, our son is 4 years old, and despite having received a cruel prognosis, he’s still able to eat, talk, and see! It’s not a miracle, though - it’s a result of his everyday, exhausting battle... Physical therapy, speech therapy, typhlopedagogy, optometrists, intellectual and psychological stimulation, and consultations with specialists are symptomatic solutions that can only slow down the progression of the disease caused by a gene mutation. 

Gene therapy is necessary to cure Julek, and since in the INAD disorder, “time is neurons”, we already need to prepare for the clinical trial.

Every day is a battle to increase Julek’s chances of living longer. It’s all that matters to us.

As parents of a terminally ill child, we need your support to help Julek access life-saving gene therapy. Please help us give him hope for the future.

Julek’s parents