Our family’s story is one of resilience, determination, and an unshakable hope. We are the parents of two beautiful children, Antonia, 16, and David, nearly 4. Both of them are bravely fighting against a rare and challenging genetic condition: the SUCLG1 mitochondrial mutation. This journey has tested us in unimaginable ways, but it has also revealed our inner strength and the depths of our love for our children.

Antonia was just 4 months old when we noticed something wasn’t quite right. She was diagnosed with cerebral palsy, but despite the diagnosis, no one suggested genetic testing at that time. For years, we accepted this explanation, focusing all our energy on therapies and care, unaware of the underlying cause.

Then David was born. For the first few months, everything seemed fine, but at 4 months, familiar signs began to appear—signs we had seen with Antonia. This time, we sought answers from different doctors, who referred us for genetic testing. That’s when we finally learned the truth: both of our children had the SUCLG1 mitochondrial mutation.

The diagnosis was both heartbreaking and a relief. We finally understood what we were up against, but we also realized how complex and rare this disease is. From that moment, our mission became clear: to fight for our children’s future and give them every chance to live the fullest lives possible.

We have traveled far and wide in search of the best care for Antonia and David, visiting hospitals in Romania, Italy, and even Canada. In Canada, with the incredible support of Liam’s Foundation, we were introduced to an experimental treatment at the Children’s Hospital in Montréal. For the past 8 months, both of our children have been on this treatment, and we are beginning to see small but meaningful improvements in their lives. These changes give us hope and the strength to continue this fight.

Each day is a battle against this relentless disease, but it’s a battle we face together as a family. Antonia and David inspire us with their courage and determination. They remind us that even in the face of adversity, there is always room for joy, love, and small victories. As parents, we dedicate ourselves to their care, doing everything we can to slow the progression of this disease and give them a better quality of life.

This journey has been far from easy, but it has also brought us closer together and connected us with a community of people who understand our struggles. Through it all, we remain hopeful—hopeful for new treatments, for better understanding of this condition, and for a future where our children can thrive despite the challenges they face.

Antonia and David are our heroes, and their strength fuels our determination. They teach us every day that love and perseverance can overcome even the most daunting obstacles.