It is impossible to imagine how devastating it would be to find out that your child has a brain tumour and then suffers a stroke. That is what happened to Dáire and his family. Fortunately, Dáire has an excellent team in Belfast to help him through his rehabilitation including Roald Dahl Neurodisability Specialist Nurse, Jennifer. Dáire’s mum, Kerrie explains how Jennifer and the team made Dáire’s recovery as fun as it could be and involved the whole family in his care.
Dáire’s mum, Kerrie: “In 2010 when Dáire was 2 years old he suddenly became very unwell and we rushed him to our local hospital in Bristol. A scan showed he had a lot of pressure on his brain due to a malignant brain tumour, which was removed during a long 12-14-hour operation. A few months later we travelled to Jacksonville in Florida so Dáire could receive special proton beam radiotherapy. Throughout this time he had to relearn to sit upright, walk and talk. Over the next few years Dáire was closely monitored by a large team of specialists. He had a lot of rehabilitation and did really well in school and sports.
In August 2016, Dáire suffered a devastating stroke. He lost all the function on the left side of his body. He also had difficulty in hearing, speaking and swallowing. He needed a brain biopsy in Great Ormond Street Hospital and started a new drug treatment in Belfast. This was a particularly challenging time for Dáire as he was also on high dose steroids which caused significant side effects of weight gain and mood changes. He also had intensive rehabilitation with speech and language therapy. He spent a long time in hospital but never complained.
In 2017 Dáire met Dr Claire Lundy, a Consultant in Paediatric Neurodisability and Rehabilitation and the Roald Dahl Specialist Nurse, Jennifer. At this point it was difficult for Dáire to engage with therapy given his frustration with his condition and being on steroids. They introduced lots of different ways to engage Dáire by using techniques such as magic therapy. They really understood that he was a child who experienced lots of medical interventions and had become weary of them. They engaged him in a way that was acceptable to Dáire, which was so important as his rehabilitation was a slow process taking place over two years with long stretches of time in hospital. For a significant length of time Dáire was wheelchair bound but a year down the line, he could walk with assistance and now he can walk unaided. The rehabilitation methods they used were based on trust and fun and they didn’t talk down to him. Roald Dahl Specialist Nurse, Jennifer was extremely encouraging and made sure Dáire was engaged and knew that he had to be involved in a way that he would want to keep coming back. It was about making him feel that he owned his recovery.
How do you feel Dáire manages his condition? “Dáire is a fun, jolly little boy who loves art and telling jokes. He manages his condition with great determination, courage and resilience. Understandably he is often upset and frustrated about his condition. He gets sad about the things he could do before the stroke and the loss of function that he may never get back. The positive side of all of this is that he is walking independently now. He continues to make a remarkable recovery and a lot of it is down to having a good, positive attitude. Roald Dahl Nurse, Jennifer’s ability to understand what Dáire needed was key to his recovery.”
What impact has having a child with a long-term health condition had on you and your family “We have a positive attitude regarding Dáire’s condition and his ongoing rehabilitation. A dark cloud will always hang over us, but we manage that together in a positive manner. Having a child with a serious, lifelong condition has been challenging, especially as we have three other children. However, we manage their expectations and embraced a new “norm” and Dáire gives us the strength to stay positive and resilient.
Although Dáire can walk independently, he has an unsteady gait and is at high risk of falls, this is very stressful. He’s 12 so he wants to run around. He was a very active little boy before all of this happened enjoying football and badminton and those are the things he’s trying to do again. Having siblings helps as he is trying to keep up with them. I think we’ve come to a threshold with his progress now. He continues to have MRI scans to monitor the situation and we are always worried that the tumour could re occur.
How has your Roald Dahl Nurse helped you cope with these challenges? “Our Roald Dahl Nurse, Jennifer has been a great support to us by turning Dáire’s mundane rehabilitation therapy and many appointments into a positive experience. Jennifer has helped us feel really supported and completely part of Dáire’s treatment. She has equipped us as a family with the skills to carry on and empowered us to see what we can do. It’s important for healthcare professionals like Jennifer to delegate aspects of the recovery to the parents and the child. They take a situation and make positive steps for parents to be able to manage their child’s situation confidently. We know we can always go back to Dr Lundy and Jennifer for help again. It’s important that Dáire is confident and needs to own his rehabilitation and understand that healthcare professionals are there for him. Jennifer has given him a great start in preparing him for all these interventions. Roald Dahl Nurses have a positive psychological and emotional impact on the child and family’s mental health. When a child experiences a traumatic event, if they don’t engage, there will be no rehab and no progress, and ultimately a demotivated unhappy child. Jennifer and the team motivated him in a way that I will be forever grateful.”
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? “To those who have donated to Roald Dahl’s Marvellous Children’s Charity and helped provide our Roald Dahl Specialist Nurse, I would say, thank you, you have no idea the impact that these nurses can have on the child and the family as a whole.”
Dáire: “I love drawing, drama and playing my X-Box. French is my favourite subject as I find it easy and it’s great to speak a different language. My favourite Roald Dahl book is James and the Giant Peach because I like the characters and it’s exciting.”
“Having a Roald Dahl Nurse is really good as Jennifer has given me confidence to try new things. She helped me by making my rehabilitation sessions fun. I was in hospital for such a long time and got very bored having to do all the exercises. My Roald Dahl Nurse made it easier for me. Talking about your condition is important because it helps me know other people understand and my worries belong to them. The advice I would give to other children who have to be in hospital a lot is to be a fighter and tell the nurses and doctors to tell you the truth and not to say everything will be fine because sometimes it’s not!”
For more information about how you can get involved with the charity, please visit www.roalddahl.com/fundraising