Meet Vilík
Vilík is a nearly two-year-old boy who was meant to have a joyful and carefree childhood. However, at just six months old, he began losing the motor skills he had already developed—he stopped rolling over, reaching for toys, and moving as he once could. After a series of medical examinations, we received a devastating diagnosis: SPG56, a rare neurodegenerative disease that impairs his muscle control, limits movement, and brings additional complications.
Despite his condition, Vilík is observant, always watching the world around him with curiosity. His favorite moments are playing with his sister—when she jumps around and sings to him, he bursts into laughter and kicks his little legs, showing just how much he wishes he could join in. He loves music, water play, bedtime light projections, and anything that helps him explore new sensations and connect with the world around him.
We are doing everything we can to bring joy into his life. Every day, we practice therapy at home and attend rehabilitation, occupational therapy, speech therapy, and hippotherapy. However, our greatest hope lies in gene therapy, which could offer Vilík a chance at a better future.
Meet Talia
This is our beautiful angel, Talia. A 6 year-old SPG56 patient from Türkiye.
She goes to a kindergarten with an inclusion teacher and she likes having her friends around. She also likes listening to music and singing songs and she really wants to be able to dance. Yet, when she grows up, she wants to become a doctor to help people.
This strong and happy girl needs one scientific step to take her own steps.
Meet Gabriela and Maxim
Gabriela is 11 years old and Maxim is 4. They are siblings from the Republic of Moldova, united not only by a deep bond of love, but also by a shared fight against one of the rarest genetic conditions in the world — Hereditary Spastic Paraplegia type 56 (SPG56). This progressive neurological disorder slowly robs them of their mobility and threatens every bit of progress they make through constant therapy and hard work.
Gabriela was born completely healthy and developed normally until the age of 1 year and 5 months, when she suddenly became fully paralysed. For years, we searched for answers. By the time we received a diagnosis, much had already been lost. When Maxim began to show the same symptoms at just 11 months old, our world was shattered again.
And yet, both of our children teach us every day what true courage means. Maxim is full of energy and imagination. He loves trucks, animals, and inventing new games with his family. Gabriela is gentle and thoughtful, passionate about music, stories, and the beauty of nature. Despite everything she’s endured, she still dreams big.
Gabriela’s greatest dream is to walk on her own again.
As their parents, our deepest wish is for a childhood without pain — a life filled with possibility.
Meet Mario and Medeea
Mario and Medeea are two beautiful, rare siblings living with SPG56 – and this neurodegenerative disease has robbed them of the ability to move, speak, and play like other children. Every day is a battle against the progression of their condition, but they never face it alone. Their parents work beside them through daily therapies, giving their time, strength, and love to help them hold on to their abilities and build skills.
Mario and Medeea are also part of this global “soul family” – children from around the world bound by the same fight, including their “SPG56 sister,” Tallulah. In 2025, Mario, Medeea and Tallulah met in Australia. Together, these parents have fundraised tirelessly, not only for their own children, but to make gene therapy possible for other families hoping to join the clinical trial.
