Remi's Story

Remi is a sociable, active little boy who loves playing games and being in the outdoors. He particularly enjoys playing in the park and the garden. When Remi was born, he was very poorly and had to stay in hospital for a week. A short while after being discharged he became poorly again and was re-admitted to hospital, into the high-dependency unit, having contracted the RSV virus.  Over the next few weeks, the family spent a lot of time in the hospital while Remi received treatment. Remi was very small for his age and had lost a lot of weight in hospital due to his ill health. Once Remi was back home, the family noticed that he had started having seizures. After recording Remi’s seizures over a few weeks, the family was referred to the epilepsy clinic for tests, which revealed a small bleed on his brain. After further tests, and with the seizures becoming more frequent, Remi was diagnosed with epilepsy in 2019. Remi’s epilepsy has delayed some of his key milestones, including crawling, walking, and talking, which led the family to attend speech therapy where they found out that Remi is also deaf.  Remi’s Mum, Stacie, says, “Remi hasn’t had the best health, but you wouldn’t know. Even on the days he’s had a seizure and isn’t feeling well, he doesn’t let it phase him.  It’s getting a bit easier now he is speaking more, but when he couldn’t communicate it was only me and Remi’s brother that could communicate with him.” Stacie continues, “Remi has emergency medication and so the biggest challenge is not being able to leave him with anyone, as only a small number of people are trained to use it. He is an active little boy, and he wants to climb on things, ride his bike, and play at the park, but he’s also very clumsy. If he bumps his head, or anything like that, we have to monitor him in case of a seizure later on.”

Meeting their Roald Dahl Nurse

After Remi’s diagnosis the family was introduced to Roald Dahl Nurse, Sasha, and right from the beginning she made a big difference in the family’s day-to-day lives. Stacie says, “When I met our Roald Dahl Nurse, she would answer questions to the point and honestly. If Remi has a seizure and I have any questions, I can text her rather than contact the hospital. I could give her a quick message and then she'll either phone me when she can, or she'll text me straight back. And if she doesn't have the answer, she'll find out from someone else.” Stacie goes on, “Nothing is too big of a question, nothing's too small and you don't ever feel like you're asking a stupid question. Sasha’s always got an answer for things and she’s always so quick to get back to me and to get organised; she has really, really helped us.”

Support from their Roald Dahl Nurse

Sasha has organised training for Remi’s school and wider family, which has been important to build confidence among family members. Stacie explains, “Sasha's not just for Remi, she's there for all of us when we are stressed out or wonder what we are going to do next. If I was having a really hard time, I know I could text her and it would be judgement-free, it would just be like speaking to a friend.” “Without our Roald Dahl Nurse we would be lost, we really would. Consultants change, so you don’t have the same relationship with consultants as you do with your Roald Dahl Nurse. Sasha is supportive, loyal and friendly and has been there since Remi was diagnosed; she’s been that constant.” The charity connection Roald Dahl Nurses are established by Roald Dahl’s Marvellous Children’s Charity. The help and support that Sasha provides for Stacie and Remi, and other families like them, is only possible thanks to the generous support of the charity’s donors. Commenting on the charity, Stacie says, “They’re brilliant! I know how it can make a difference, so well done and keep going!”