“In 2018 our wonderful, happy little boy Arthur was diagnosed with SLC6A1, a rare debilitating neurological condition that currently has no cure. It would change the course of his life forever. Arthur suffered from hundreds of seizures a day. These seizures were subtle absences and frequent blinking called ‘eye myoclonis’. He would fall frequently during these episodes and from the hypotonia (muscle weakness) he suffers from as part of this disease. Arthur has learning disability and he is significantly delayed for his age, was unable to speak in sentences until almost 5 years old, has sensory processing issues, has Autism and ADHD. As a newly discovered disease (2015), his future and the devastating effects of this disease are unknown. At the time of his diagnosis there were just 34 known families in the world diagnosed with this condition, and very little was known about it. We were put in touch with these families, and from there support and patient advocacy developed. SLC6A1connect.org was created by Amber Freed, mother to twin Maxwell Freed who suffers from the disease and is based in Denver, USA. Amber is a true ambassador for these children and has fully committed to research, development and finding a cure”.
“As parents we wanted to join the fight, for our son, and all of the children and young adults suffering from this horrible disease. Research into curing this disease is underway in the US using funds already raised by the affected families, millions more is needed to get it from bench to bedside. Money raised through Arthur’s Quest will directly support research and development in the UK and internationally”.
“Since starting this charity, we received devastating news that, against the odds, our second child also has SLC6A1”
“Together we can accomplish anything”
Lindsay & Daniel