CURRENT AGE: 11
HOME TOWN & STATE: Roosdaal-België
DIAGNOSIS DATE: April 2019
PARENTS: Gino and Leyla
SIBLINGS: His sister, Naomi
What it felt like when we learned our child has SLC6A1? To be honest we were not that surprised. Finally, after 5 years, we had the answer we were always looking for.
How did you know something was wrong? From the very beginning of Axl’s life, we knew something was seriously wrong. Everyone told us he was just a kid that needed extra assistance and attention… but we knew that wasn’t the case. When Axl turned 5 we started down our long journey of frequent and frustrating testing.
The hardest part of being an SLC6A1 family? The hardest part of living this nightmare is the necessity to reveal our private life in order to advocate for Axl. We sometimes feel as though we must beg others to give him the precious life he deserves. He needs our voice, and we will do everything in our power to give that to him.
What are your dreams for Axl? It is our deepest desire for Axl to experience a normal childhood. For him to play with friends… learn to his best ability… and live his life to the fullest, without fear. This is something that every child deserves, and we wish this reality for everyone affected by this terrible disease.
Why would you like people to donate to SLC6A1 Connect? Gene therapy treatment is absolutely the future of modern medicine. We must work to fund this miracle treatment- for our children and everyone affected by similar genetic mutations. We have the ability to cure a multitude!