The walls of their family home in East Sussex bear the brutal scars of a condition few have ever heard of. For mother Carly Jones, every day is a battle to keep her 11-year-old son, Riley, safe from himself and their home from destruction.
Riley lives with an ultra-rare genetic disorder known as GRIN2B. This isn't just typical childhood misbehaviour; it's a neurological condition that triggers extreme violence, property destruction, and self-harm. The family's world has been turned upside down by a disorder so rare that even many medical professionals are unfamiliar with it.
A Home Under Siege
The reality of living with GRIN2B is almost unimaginable. Carly has documented the devastation: holes punched through walls, doors ripped from their hinges, and furniture shattered beyond recognition. The violence isn't just directed at property – Riley often turns his aggression toward himself and his family, leaving them in constant fear for their safety.
"He's destroyed our home, even tried to set it on fire," Carly reveals, her voice heavy with the weight of years of struggle. "We've had to replace everything from doors to windows repeatedly. The emotional toll is even greater than the physical destruction."
The Endless Fight for Support
Perhaps more devastating than the condition itself has been the family's fight for recognition and support. Carly describes years of being dismissed by authorities who mistakenly labelled Riley's behaviour as poor parenting rather than recognising the medical reality.
"We've been failed at every turn," she explains. "From social services to healthcare providers, no one seemed to understand that we were dealing with a genetic disorder, not a disciplinary issue."
The family's experience highlights the critical gap in support for families dealing with ultra-rare conditions. Without proper recognition and specialised care, parents are left to navigate the crisis alone, often with devastating consequences for the entire family's wellbeing.
A Mother's Unwavering Love
Despite the immense challenges, Carly's advocacy for her son remains unwavering. She has become an expert on GRIN2B, connecting with other families worldwide and pushing for greater awareness of the condition.
"I will never stop fighting for Riley," she states firmly. "He's not a 'bad child' – he's a child with a severe medical condition that needs understanding and proper support. Families like ours shouldn't have to battle the system while trying to keep our children safe."
Her story serves as a powerful call to action for better support systems, increased research into rare genetic disorders, and greater compassion for families living with conditions that remain invisible to so many.
