Callum is nearly three and has Ohtahara syndrome – a rare epilepsy condition.
When Amie and Paul welcomed their newborn baby boy into their family 6 years ago, at first they thought everything with little Callum was fine. But when he was five weeks old, Callum started fitting and was hospitalised for nearly four months. He had an MRI scan, a lumbar puncture, blood tests and genetic testing and it took almost a year before he was diagnosed with Ohtahara syndrome – a rare epilepsy condition. Amy and Paul later learned that Callum also has cerebral palsy and scoliosis – curvature of the spine.
For Callum’s family, Tŷ Hafan has been ‘a rock’.
Amie said “Going to Tŷ Hafan gives us time to be together as a family and brings us closer. Paul and I go with Callum’s sisters for short breaks and once we’re there we really relax and do all the normal things that other families take for granted. We’ve also been for emergency care when Callum hasn’t been too well. I feel totally confident to hand him over to the care of the nurses. They know exactly what they’re doing”.
Despite this, Callum is such a pleasant little boy who we love to bits. We wouldn’t change him for the world.
When the nurses look after Callum, it gives us time to spend with our daughter, Kelcea. They have helped us so much and we can’t thank them enough.
Tŷ Hafan takes its support to wherever it is needed: at home, at school or in hospital. We do this completely free of charge for families in Wales that need us. Please help us continue to be there for life-limited children and their families, so they can make the most of the precious time they have left together.