Poppy's Story

"Life is difficult, very difficult some days. Seeing our daughter struggle with the seizures is never going to get easier,” says Georgia, Poppy’s mum. “But Mel has transformed our experience of this life in so many ways. Poppy is less stressed for sure, and knowing I can call Mel – knowing we have her in our life – is so reassuring. She gives us such faith and trust in Poppy’s care and future. I don’t know what we’d do without her."

Poppy is – in her mum’s words – a ball of energy. From the moment she wakes, she’s bouncing. On her trampoline, in the pool, as she plays. She may not be able to talk, but she never leaves her family in doubt about what makes her happy and what she wants to do. Her sense of humour has them smiling every day - and draws in those around her.  But this is a complicated life for Poppy and her family. The biggest challenge they faced in the early years was, says her mum Georgia, not knowing what was behind Poppy’s emerging health issues and then, as time passed receiving news that it might be cerebral palsy, or PVL (Periventricular Leukomalacia), a brain injury causing problems with movement and development. It proved to be neither, but their neurologist has more recently discovered (when the hospital reran Poppy’s genome sequencing) a genetic disorder call ReNU, with symptoms included changes to the structure of the brain. Poppy also has a metabolic condition called Ketotic hypoglycemia.  It goes without saying that the family’s journey has been stressful and complicated, with a range of medical teams - Neurology, Genetics, Orthopaedics, Ophthalmology, Metabolics – all involved in Poppy’s journey to now. And then two years ago, when she was just two years old, Poppy started experiencing epileptic seizures. They are sporadic but severe, and she sometimes experiences several in a day. They are also incredibly hard to manage as Poppy appears to be drug resistant and the family would, each time, rush into A&E and then be in hospital for a couple of days. But it was at this critical point in their daughter’s childhood that the family were introduced to Mel, a Roald Dahl Nurse. And she proved, they say, to be a ‘godsend’ who helped them through this hardest of years.  “When we’re in hospital and Poppy is having seizures there are a lot of people around, everyone dealing with the problem in the moment,” explains Georgia. “But Mel came into the picture and really saw and understood what this whole experience was like for us and for Poppy and the stress it was causing. As she got to know us, she came to really know and understand Poppy.  The fact that when she’s having seizures she doesn’t present as many medics might expect. How being in hospital can be really traumatic with her complex needs. Mel really listened to our experience and our questions and concerns. And she quickly became our advocate, our voice and first port of call and a lifeline." Georgia explains that when the seizures start, she and Poppy’s dad are always faced with the difficult choice – can we manage this at home, or do we need to rush into hospital. “Mel completely understands that,” says Georgia. “She has put in a place a plan to help me and Poppy’s dad to keep her at home for as long as it’s safe to do so, but also given us really clear advice about when we have to go into hospital. That’s given us so much confidence in our care of Poppy, and it helps Poppy relax too. I can’t tell you the relief we feel.”  And, when they’re in hospital, Mel will be there, explaining Poppy's bespoke needs and experience of epilepsy.  “If we have questions about the treatments or tests, Mel will explain everything or go and find the answers we need.  She’ll be in appointments with us, advocating for Poppy. She doesn’t just sympathise with trauma Poppy suffers or the stress we all experience, she does everything she can to alleviate it. And sometimes she’s just there for us, a shoulder to cry on.”  

Poppy has just started school and Mel and Georgia worked together to make sure the staff there properly understood Poppy’s needs and have everything in place to support her.   “That meant I was able to say, ‘let’s go’…to have some of that pleasure of seeing her move into this new phase because I had more confidence in her experience of school,” says Georgia. “Life is difficult, very difficult some days. Seeing our daughter struggle with the seizures is never going to get easier.  But Mel has transformed our experience of this life in so many ways. Poppy is less stressed for sure, and knowing I can call Mel – knowing we have her in our life – is so reassuring. She gives us such faith and trust in Poppy’s care and future. I don’t know what we’d do without her.   “Those who have helped make this possible by funding this position and by supporting Roald Dahl’s Marvellous Children’s Charity are helping us as a family cope and we are, and we always will be, so grateful.”