Georgia (16) was diagnosed with epilepsy in November 2018 and has been supported by Roald Dahl Specialist Nurse, Louisa Griffith. Louisa has been a vital support for Georgia’s mum, Karen and has helped bring “peace of mind” to Georgia.
Roald Dahl Specialist Nurses are experts in co-ordination of care, ensuring children who are often under a large number of consultants and healthcare professionals, have as seamless an experience as possible. They go over and above providing specialist clinical and emotional support and are always at the end of the phone to support parents who regularly have urgent worries and queries about their child. So much is unknown about these conditions and the impact they have on the children so the nurses also regularly educate teachers, schools and other healthcare professionals on the needs of children who have a long-term serious health condition to ensure they have the care they need.
Tell us about Georgia’s condition and the circumstances of their diagnosis: Karen: “Georgia was diagnosed with epilepsy in November 2018 and has had a really horrible journey since then. It’s been a really tough year and Christmas that year was completely wiped out. She has had over a hundred seizures and they come in clusters meaning she can have seven in one day. As a result, Georgia has been on lots of different medication, but none have worked so she is now on the highest possible level of medication and has had fewer seizures since then. She has really struggled due to so many changes in medication and has missed an awful lot of school which has been particularly tough as she is in her GCSE year. Georgia has to take ten tablets morning and night and the medication affects her mood and her whole body. She has also had a number of falls which resulted in injuries including the need to replace a front tooth. Despite this, she is resilient and strong and has managed to stay positive and keep plodding on. She has spoken at assemblies at her school to raise awareness about epilepsy and has won three awards for bravery at school. Since she’s on this new medication, she’s been a bit better and started doing things she loves like kickboxing, which she loves doing with her older sister with whom she is very close.”
How has the Coronavirus outbreak affected you and Georgia so far? Karen: “Georgia was really upset when she was sent home from school because her being at high risk, so she missed the last day in school and didn’t get to say goodbye to teachers and friends. We had an appointment at Royal London’s neurology department but ended up having a phone call instead. The doctor is changing her meds again as she is having bad side effects from the medication she is on. Other than that we have enough meds for now and are managing with the shopping side of things at the moment.”
(Photo: Georgia with other children supported by the charity at a recent event at The Savoy in London.)
What impact has having a child with a long-term health condition had on you and your family? Karen: “Georgia is a typical 16-year-old. She loves fashion, face masks, going out for meals and shopping but her diagnosis has had a big impact on her life – it’s really restricted her. The family used to always go to Alton Towers and swimming and it’s been really hard to have to stop doing this. I’ve been stressed about letting Georgia go to school in case she has a seizure at school although fortunately, she has mainly had seizures at home. The situation felt out of my control and the worry is always there at the back of the mind that she’ll have a seizure when she’s on her own. I know that Georgia worries about upsetting me, so she talks to her sister a lot and her friends as she wants to protect me. Generally, Georgia has her ups and downs. Epilepsy is an invisible condition and people don’t know much about it, which is why she feels it’s so important to raise awareness about it. She is a very strong person.”
(Photo: Roald Dahl Nurses, Lynn and Louisa)
How has your Roald Dahl Nurse, helped you cope with these challenges? “When Georgia was diagnosed, her Roald Dahl Nurse, Louisa, came and explained about it and gave us lots of information. The fact that she is always there on the end of the phone makes all the difference. Her support has been invaluable. If we didn’t have our Roald Dahl Nurse, it would make things so much harder. To those who have donated to Roald Dahl’s Marvellous Children’s Charity and helped fund our Roald Dahl Nurse, I would say I couldn’t thank them enough. I would struggle at home a lot more if it wasn’t for Louisa and if the help wasn’t there when you need it.”
Georgia adds: “I love kickboxing and swimming and my favourite subject at school is debating which is why I particularly enjoy religious studies at school as we have lots of debates. Having my Roald Dahl Nurse, Louisa is very helpful and informative. My condition can be very stressful, and Louisa helps bring me peace of mind that I’m not the only one in this situation. It’s really important to me that if something’s worrying me, then I can speak to my Roald Dahl Nurse. It’s very reassuring. When I’m older, I would like to work in paediatrics in hospital because of the care I’ve had.“
There are so many children like Georgia who have serious, lifelong illnesses. PLEASE DONATE to enable us to support more of them.