Albie is our superhero. He’s 4 years old and Albie is full of life, spirit and energy. He faces a daily struggle that no child should ever have to endure. At an age when most children are carefree and full of boundless energy, Albie faces the devastating effects of Dravet Syndrome, a rare and severe form of epilepsy. .

Dravet Syndrome is a cruel genetic disorder that typically manifests in the first years of life, causing frequent and prolonged seizures that can be life-threatening. For Albie, this means living with the constant threat of sudden, uncontrollable seizures that can strike at any moment.

As Albie's family, we are heartbroken but every day, we witness his bravery and resilience in the face of challenges that would overwhelm most adults. His smile and relentless energy and bravery lights up our lives and strengthens our resolve to fight for his future.

That's why we are committed to raising £10,000 to support crucial research into Dravet Syndrome. This funding is not just about finding better treatments or a potential cure; it's about giving Albie and children like him the chance at a life free from the constant fear of seizures and developmental setbacks. It's about hope – hope for breakthrough therapies, hope for improved quality of life, and hope for a future where Dravet Syndrome no longer dictates the terms of a child's existence.

As Albie’s family facing this is scary. But when life gives you lemons you must make lemonade so we are committed to hosting events and personally challenging ourselves (and anyone who wants to support) to do things that are hard and uncomfortable - all to raise as much money as possible to change the future narrative.

Every pound raised brings us one step closer to unravelling the mysteries of this devastating condition and developing more effective ways to manage its symptoms. It means more resources for scientists working tirelessly to understand the genetic underpinnings of Dravet Syndrome and to develop targeted therapies that could transform lives.

For Albie, and for all children battling Dravet Syndrome, we ask for your support in this crucial mission. Together, we can make a difference. Together, we can give these brave children the chance to experience life to its fullest, free from the shadows of this relentless condition.

Watch this space for info about events and challenges 💙❤️

Thanks for reading and supporting