Lily (16), a keen aerial trapeze artist, was diagnosed with severe epilepsy in 2018. We caught up with her mum, Mary to find out what it’s like to be thrown into the “petrifying, unknown” world of having a child with a serious lifelong illness and how Lily’s Roald Dahl Specialist Nurse, Becs has helped with expert support, sympathy and hand-holding realism:
Tell us about Lily’s condition and the circumstances of her diagnosis? “Lily had her first seizure in December 2018 at the age of 14 years old. When she was diagnosed, it was petrifying as we had no idea what life was going to be like. There were lots of tears and unanswered questions. It was a really difficult time. Lily has got complex epilepsy and has eight or nine seizures a day. She has been admitted to intensive care four times and had multiple hospital stays. She has been induced into a coma in four times in the last four months and there’s a question mark over the kind of seizures she is having so she is still being closely monitored by her consultant to get a clear diagnosis. When she has a seizure, it’s hugely scary as you never know if she’s going to come out of them.
As soon as we got allocated to our Roald Dahl Specialist Nurse, Becs, all those fears slowly diminished. Becs is very supportive and sympathetic but equally very factual and that’s what we needed. We didn’t want it flowering up and she said it to us straight: “This is what Lily is going to go through and this is what to look out for.” I’ll never forget her frank conversation where she told us about likely side effects to Lily’s medication but because of this, we were prepared and had the knowledge to be able to cope. Becs has been with us at every appointment with Lily’s consultant and through all Lily’s hospital admissions. She has been our hand-holding realism.”
Tell us about Lily– what does she love to do in her spare time? “Lily is a keen aerialist and she performs on the aerial silks, hoop and trapeze. She practises thirteen hours a week and belongs to a very inclusive aerial studio called Luna Aerial Arts. Fenella Carcary coaches Lily 1:1 and in classes, she is fully understanding of Lily’s condition. She accepts her disability but always focuses on her ability. We often have to try and untangle Lily from the trapeze/ silks when she goes into seizure in the air!”
What impact has having a child with a long-term health condition had on you and your family? “Our lives have significantly changed since Lily’s diagnosis. I have had to stop working as a teacher as Lily needs 24-hour care. Holidays abroad, trips away from home and things we used to take for granted like popping to the shops have all changed as Lily can seizure multiple times a day.
Despite this, we encourage Lily to continue with her hobbies and passions. She does aerial trapeze and she recently had a seizure during a class. She has a rescue drug, but it didn’t stop the seizure so the emergency crew came, and she was put into a coma to try and stop the seizure. She is autistic too and I’m at home with her full time. It’s affected her younger brother, Sol (13) quite badly at times but he gets a lot of support at his school and his young carers group. Lily has an EOTAS (Education Other Than At School) package so she is home educated now. She was at a special school previously, but they couldn’t deal with the amount of seizures she was having and she didn’t feel safe and experienced a lot of stress which affected her learning. Now, she’s at home, we have tutors coming in daily.
How do you feel Lily manages her condition? “Most of the time she copes really well but at times she can’t see past the debilitation of having a seizure disorder and how it has taken over her life. Lily still needs a lot of support from adults to cope and manage her condition.”
How has your Roald Dahl Nurse helped you cope with these challenges? “Our Roald Dahl Nurse, Becs has been amazing. She is full of practical advice. She is a walking medical guru and really supports the whole family. She sees the issues and provides practical support to get over them. We can access her weekdays whenever we need anything, and she will liaise with consultants for us. Becs has built up a strong relationship with Lily and Lily trusts Becs implicitly. If Lily has any questions, she will talk to Becs rather than the doctors.
She helps us with managing Lily being under different departments at two different hospitals as that can be challenging and she sorts out prescriptions with the GP. She will also just phone and send an email asking how everything is and I’ve got to say means a lot. Sometimes, when you are dealing with medical profession, you don’t feel on the same level whereas with Becs, I feel I can say anything and she gets it. She has a more human approach to stuff and she helps us realise that although we’ve got this for the rest of our lives, it’s not he end of the world. Life will continue and it’s not a case of life stops, which I’ve felt at times especially when Lily has been in intensive care. It’s been dire but Becs is always realistic and keen for us to feel that having epilepsy shouldn’t stop Lily doing whatever she wants to do. That’s helped us enormously as you can’t help feeling that it’s the end of life as we remember it.”
How would you feel if you didn’t have your Roald Dahl Nurse? “We would be lost, confused, overwhelmed and quite frankly terrified! Seizure disorders are complicated and consume the whole family’s lives. Becs helps us to navigate this new world. I couldn’t have got through the last few months without her. She’s a godsend, absolutely brilliant.”
What would you say to the people who have donated to Roald Dahl’s Marvellous Children’s Charity and helped fund your Roald Dahl Nurse? “Thank You! Thank You! Thank You! We are truly grateful. We would have struggled to get through the last few months without our Roald Dahl Nurse, Becs.”
What is it like to have a Roald Dahl Nurse? “It is great to have Becs. There isn’t anything Becs doesn’t know about epilepsy. She is fun and doesn’t look like a nurse. She isn’t sterile and doesn’t wear a uniform. She also understands autism too.”
How does your Roald Dahl Nurse help you? “Becs makes sure that the doctors listen to what I want or think. Sometimes they talk about me if I wasn’t there. Becs makes sure my views are listened to.”
What would it be like if you didn’t have a Roald Dahl Nurse? “I wouldn’t have a voice! I would be treated like a young child and not a 16-year-old girl. Having this condition would be more frightening. Becs keeps everything ‘real’. She says it as it is and doesn’t make false promises.
For more information about Roald Dahl Specialist Nurses and their important work, please visit the charity section of the website: www.roalddahlcharity.org