Teddy is a typical 10-year-old boy who loves anything adventurous and is a real thrill seeker. His mum Jasmine describes him as having a big heart and full of affection: “When Teddy loves you, you know about it.”

At just six weeks old, Teddy suffered his first seizure. For months, his family were told they were febrile convulsions, but Jasmine knew in her heart that this wasn’t the case.

After four months of frequent seizures, sometimes multiple in one day, Teddy was sent for lots of different tests, including EEGs, which all came back clear. As Teddy got older, Jasmine noticed he wasn’t meeting his age-appropriate milestones, and she knew something wasn’t right.
Jasmine did her own research and found Dravet syndrome, a rare and complex form of epilepsy. Though doctors dismissed the idea at first, telling her it was very rare, Jasmine pushed for Teddy to be gene tested. “I insisted he was tested, and there it was, his diagnosis. Our world changed there and then,” she said. “The medications have been a trial throughout his life, some stripping him of his personality, some making him angry, some making his seizures worse.”

“At times Teddy has been very unstable with his seizure control and has had to be airlifted to hospital when his emergency medication hasn’t helped. When this happens, to stop the cluster seizures, the only option to stabilise him is to put him in an induced coma.”

When Teddy was four, as Jasmine struggled to come to terms with his life-limiting diagnosis, Little Havens was suggested to support the whole family, and they’ve been there for them ever since, from monthly visits by the Community Team at home, with a carer he has a “beautiful bond with”, to overnight respite where all of Teddy’s needs and medication are taken care of.

“Little Havens provides a safe space where all of Teddy’s needs are met. His favourite is the hydrotherapy pool, which gives him sensory input, freedom and relaxation. This respite helps me spend quality time with his siblings, whilst I know Teddy is being looked after in a safe place.”

“If we didn’t have Little Havens, our lives would be very difficult. There care at the hospice and in our home gives us both an opportunity to recharge and for Teddy to build bonds with people that aren’t just his immediate family.”