“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 at 4 years old, he is significantly delayed for his age, is unable to speak in sentences, has sensory processing issues, and is showing signs of autism. As a newly discovered disease, his future and the devastating effects of this disease are unknown. At the time of his diagnosis there were just 30 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 Rockstar and has fully committed to advocating for our children, 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 this research and affected families”.
“Together we can cure these children”.
Lindsay Dilley & Daniel Randall