Ahuoyiza's Story

Posted by
Vicky Hewlett
Posted on
11:30am, 11th December
photo of Ahuoyiza

“I know Ahuoyiza is taken care of when she’s in hospital and that really settles me. She sees her Roald Dahl Specialist Nurse, Elizabeth and she knows she’s going to be ok.”

We caught up with Ahuoyiza’s mum, Sarah to find out how Roald Dahl Specialist Nurse, Elizabeth has helped the whole family manage Ahuoyiza’s Sickle Cell Anaemia.

Tell us about Ahuoyiza’s condition and the circumstances of her diagnosis. “Ahuoyiza (8) was diagnosed at birth with Sickle Cell Anaemia, an inherited serious condition that affects the red blood cells. When she was three years old, Ahuoyiza had her first Sickle Cell crisis (episode of severe pain). When she has a crisis, she tends to get chest infections and sometimes it escalates to pneumonia, which happened when she was five years old. It was very scary, and she still remembers it despite being so young at the time. The doctors appeared from everywhere saying ‘we need oxygen’. It was very frightening as we didn’t know what was going on. At five, she also had a spleen crisis. When she catches the slightest cold or bug, her spleen can enlarge, and it causes a lot of severe pain and she has difficulty sleeping and eating. She has been admitted to hospital three or four times because of that and one of those times, she was in for at least 7-9 days. The recovery always takes a lot of time once she is home as she has to take a lot of medication. She has been on new medication for the last three years and that has made a big difference.”

“There are always tell-tale signs when Ahuoyiza gets ill. Generally, she’s a happy, bubbly girl but when the pain comes on you can see the difference. If we’re not sure what’s going on or what we need to do, we can pick up the phone to our Roald Dahl Specialist Nurse, Elizabeth and she will help us straight away. Ahuoyiza’s pain can come on quite suddenly. She can be fine on the way to school and then we will get a call to say that we need to pick her up and she’ll be white as a ghost and we’ll need to get medical care quickly. She gets tired a lot and sometimes can’t take part in activities like PE at school. She has two younger siblings aged four and six, but she’ll most often be the first one to sit out. She’s still learning about her body and its limitations.”

photo of Ahuoyiza

“We didn’t meet our Roald Dahl Specialist Nurse, Elizabeth until we moved to Luton in 2014 so we’ve known her for around five years. We were going through a difficult time the first time we met her as we were new to the area and to the hospital. Having someone there that knows what’s going on has made everything so much easier. Ahuoyiza loves Elizabeth too – there’s always a smile on her face when she’s in hospital and she sees Elizabeth – those little things make a big difference.”

“Elizabeth was immediately great at calming Ahuoyiza down and could get her blood tests done in one go. Ahuoyiza quickly got used to her – it’s been very natural, and we see her as ‘our person’. In London, we would see different doctors every time whereas we know the team in Luton. She has one consultant and Elizabeth and one other nurse, Maureen. We are so lucky to have such a great team that we can approach and talk to, to have an open conversation.”

Tell us about Ahuoyiza? “Ahuoyiza loves gymnastics – she wears herself out doing that! She also loves sewing and playing her recorder. There have been times when she’s been sick when she’s supposed to do her next recorder assessment, so she’s had to miss it, which makes her gutted!  Ahuoyiza trusts Elizabeth and can ask her any questions she needs to. She particularly enjoys the books that Elizabeth often gives her when she’s in hospital.”

photo of Ahuoyiza

What impact has having a child with a long-term health condition had on you and your family? “It’s very stressful as a mum. Sadly, my husband had a stroke in 2016. Straight after he left hospital, Ahuoyiza was in two weeks later with pneumonia. I’d just had a new baby as well so there was a lot going on. Once Elizabeth and the team were aware of that, they were so good and always asking how they could help. It’s very hard. When your child is ill, it flaws you completely. You feel so helpless and drained. Somehow you have to put a brave face on for them and the younger children.”

“Having good family support like I do and support from Elizabeth makes a big difference. Since Ahuoyiza’s been on the new medication, we’ve only had to stay in hospital for one or two nights. Having a child with a serious, lifelong condition affects everything. Because of my husband’s stroke, he can’t stay in hospital with Ahuoyiza, so I need to take time off work (I work full time as a train driver). My mum is brilliant and helps out as much as she can.”

What kind of challenges do you and your family face as a result of having a child with a long-term health condition? “I have to constantly monitor how tired Ahuoyiza gets and make sure that she wraps up when she needs to. Cold is a trigger for Ahuoyiza so we have to be very careful what she does outside during the colder months and walking to school in the snow for example is out of the question. We have to change our plans a lot because she gets tired. The younger ones see her taking her medication and know that things are a bit different and that she needs a blood test every six weeks. They ask why but they understand there’s something unique about their big sister. Sometimes, Ahuoyiza is ill in the night and they wake up in the morning and she isn’t there and they ask if she’s going to be ok. It’s quite heart-breaking when they realise she’s gone. My six-year-old son really worries about Ahuoyiza when she was in hospital. It reminds you that they need support too. They know Elizabeth too as they come along to some of Ahuoyiza’s appointments and she always includes them.”

photo of Roald Dahl Nurse, Elizabeth

How has your Roald Dahl Nurse helped you cope with these challenges? “I know Ahuoyiza is taken care of when she’s in hospital and that really settles me. She sees her Roald Dahl Specialist Nurse, Elizabeth and she knows she’s going to be ok. She asks questions herself and Elizabeth has helped build her confidence and understanding about her condition. Elizabeth is great at helping me when I have problems getting medication from the GP. Beforehand, I would have had to wait weeks for it and wouldn’t have known what to do. Now I can call Elizabeth and she calls back straight away and will sort out the problem. Elizabeth ensures that I know what to do next. I can send her a text message about a blood test and say, ‘I’m not sure about this’ or ‘is this correct’ and I get an answer straight away. It takes that anxiety away, knowing that I can pick up the phone and text and get a straightforward answer. Elizabeth was very supportive when my husband was ill – she didn’t bombard me with more information than I needed.”

“Elizabeth is great with Ahuoyiza too. She gave her a book called ‘George and the Dragon’ which tells a story all about a child with Sickle Cell to help children better understand their condition. It came at a good time when she was starting to slowly understand what it was. Things like that help her understand more about her treatment and see that the same things happen to other children so she can relate to it. It’s good for her siblings to have that too so they understand that Ahuoyiza having a cannula is normal. When Ahuoyiza is at appointments, she has started to ask lots of questions and Elizabeth is great at explaining in a child friendly way. It makes a huge difference to children for them to have someone they are comfortable with and someone else to have a conversation with. I can pick up the phone and get an answer I understand immediately. Our Roald Dahl Specialist Nurse, Elizabeth has been a great help to us as a family. There is so much going on when you have a child with a serious, lifelong illness and having one person that knows everything about my child that I can contact whenever I have questions is amazing.”

How would you feel if you didn’t have your Roald Dahl Nurse? “I think I would feel very lost in all honesty. It’s so good to know you can pick up the phone and speak to someone and get a straightforward answer. Elizabeth knows everything about Ahuoyiza and I don’t have to go through everything again as you get fed up when you have to do that all the time. When Ahuoyiza had to go into hospital for her Transcranial Doppler Ultrasound scan during the COVID period and she was shielding, I wasn’t happy as I didn’t feel it was COVID safe. I explained everything to Elizabeth and she arranged another appointment. It was good to be able to share my frustration with her and know that the appointment would be rearranged. It really helps to have someone I can get things like this off my chest with. It’s so reassuring knowing that you have someone on your side. It’s so simple but so vital. Elizabeth knows my child and knows she’s bubbly and when she’s not, she notices. That goes for me and my husband – we both feel we can speak to her about anything.”

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? “It’s extremely important that people donate as having a child with a lifelong illness is a huge thing for families. We know the situation isn’t going to change and having someone that makes that journey that bit easier makes it better, especially when the child is growing up. Not many people want to talk about Sickle Cell, and I don’t want the same for Ahuoyiza. It’s not going anywhere and being able to speak about it is very important. It’s important for her to know when she gets older that there are people out there that care and that there are charities that can help people like her. It’s great for families. Some don’t want to speak to the whole world but would feel secure talking to their Roald Dahl Specialist Nurse rather than lots of doctors. It feels more secure and more private. Knowing that my child has someone she trusts to speak to is amazing. When she has questions I can’t answer, I’ll say, ‘let’s go and ask Elizabeth together.’ It makes her more aware of her body and helps her talk about it openly. It’s simple but it’s reassuring to know that she can choose to be more open about her condition.”

photo of Ahuoyiza

Ahuoyiza has been so inspired by her Roald Dahl Nurse, Elizabeth that she is planning to follow in her footsteps!

Ahuoyzia: “When I grow up, I think I might want to be a Roald Dahl Nurse and look after all the children with sickle cell too. Elizabeth has made me want to be a Roald Dahl Nurse as I want to follow what she does. And also, I’d maybe like to be a gymnast!”

What are your hobbies and what is your favourite subject at school and why? “I love gymnastics. My best move has to be a back walkover – it’s a bit scary. I’m a bit nervous going back to school. I will be in a bubble which will be weird but I’m looking forward to seeing my friends. My favourite lesson has to be Geography. I like that we get to find out about new things like the rainforest and the amazon. I also like Maths and English.”

How does your Roald Dahl Nurse help you? “She is kind and nice and whenever we go to the hospital she is always there – it’s good.She sometimes gives me books, stickers and badges.”

What’s your favourite Roald Dahl book or character and why? “My favourite Roald Dahl book is The Twits because it’s funny. I like the monkeys – they are funny when they hang upside down.”

What would it be like if you didn’t have a Roald Dahl Nurse? “A bit sad – I look forward to seeing her a lot.I think all children like me should have a Roald Dahl Nurse.”

How important is it to talk to friends, family and/ or your Roald Dahl Nurse about your condition? “It’s very important and good to talk to Elizabeth as she knows all about it. It’s very important to ask questions.”

What advice would you give other children who have to be in hospital a lot or have a lot of treatment? “My advice is to stay strong and know that you will get better and keep on doing the things you love.”

Find out more about the vital work our network of Roald Dahl Specialist Nurses do.