Mia's Story

Meet Mia Mia is an energetic, fun-loving 1-year-old who loves hugs, animals and babies.  Mia was initially diagnosed with Reflex Anoxic Seizures (RAS) at just two months old, but at 13 months old suffered her first epileptic seizure and was also diagnosed with Anoxic Epilepsy.  Mia’s condition is complex and extremely rare, meaning specialist support from their Roald Dahl Nurses, Jo and Sammy has been vital for the family. Meeting their Roald Dahl Nurses Shortly after Mia was diagnosed with epilepsy, the family were introduced to their Roald Dahl Nurse, Jo.  Having a child with complex medical conditions can have a huge impact on the whole family. Support from their Roald Dahl Nurses ensures the family have a person to turn to in challenging times.  Sophie, Mia's Mum, says “Our Roald Dahl Nurses have just been incredible. Mia’s conditions are quite complex, and they have educated us so much. We've had so many fears or questions and they've always been there to answer them and to comfort us. Jo is so understanding and gives me a place to feel understood.” Support from their Roald Dahl Nurses Jo and Sammy support the whole family both clinically and emotionally, managing appointments, medication and have supported the family through months of ongoing tests, helping to get a diagnosis for the family. Sophie says, “Jo has just been incredible. She's come to all the appointments and answers any questions. She’s always been at the other end of the phone.”  Their nurses support also means the family no longer have to visit the hospital as frequently which has helped improve family life.

Supporting the whole family  Jo also provides support for the whole family, including Mia’s siblings, who found Mia’s diagnosis difficult and upsetting.  The nurses created an activity pack for Mia’s brothers, including fun games about epilepsy and a short video about the condition. The family went through these resources together which has helped Mia’s brothers process and understand the condition more.  Sophie says, "Support from our Roald Dahl Nurses has changed our lives in so many ways. Without them, I would feel completely lost. I don't know how we would have got through these few months without them.”

Family Fundraising After seeing first-hand the impact their Roald Dahl Nurses have on the family, Mia’s older brother, Jack, took part in the Kiltwalk Aberdeen last month, raising over £1,000 to help establish more vital Roald Dahl Nurses like Jo and Sammy. By donating today you can help more families like Mia's receive the specialist care and support they need. Please donate today and Do Something Marvellous for these brave children and their families.