Sela (15) was born with the serious, lifelong illness, Sickle Cell Anaemia and is cared for by Roald Dahl Specialist Nurse, Caroline at St. Georges Hospital in Tooting. We caught up with Sela and his mum, Jacqueline to find out more about how she helps.
Tell us about Sela’s condition and the circumstances of his diagnosis. Jacqueline: “Sela (15) was born with Sickle Cell Anaemia. He had a stroke when he was just three and a half years old and it was a shock to our system because we didn’t know Sickle Cell could have such a drastic effect. It’s been a real turmoil for us with managing his condition. Since the stroke, Sela has had to have blood transfusions every four weeks. They used to take six to eight hours until new technology was introduced, which means that it now takes around three hours. The team at St. Georges, especially our Roald Dahl Nurse, Caroline, have been amazing. I don’t know what I would have done without them, they have walked me through Sela’s life. I couldn’t have survived without them. They have helped Sela recover so well. You’d be amazed to see him walk to hospital on his own now to do the crossmatch blood transfusion. They have educated him on what to do so that he has his data at his fingertips. He can give you his hospital number, blood group etc. They really have been good to me and my son.”
How has your Roald Dahl Nurse, Caroline, helped you cope with these challenges? Jacqueline: “Our Roald Dahl Nurse, Caroline is so efficient. She is just there; someone you can just call when you need to. I don’t know how to put it in words, but she has really gone over and above for us. I mentioned in casual conversation to her that we couldn’t afford to go on holiday, and she said, “I’ll organise something for him. He needs a break after having to have all those transfusions.” She managed to get one of the last two spots on a bootcamp for him. She is just there for us – you don’t have to say, “I’m struggling”. When the Coronavirus outbreak happened, she called to ask if we had enough food and juice for Sela as nutrition and fluids are so important to stay healthy when you have Sickle Cell. I work but food prices have gone up and within four hours, the council called me to ask if I was struggling with food. Caroline called later to check that the council had called and that we were getting food delivered. Caroline just gets things done! Support like this is so important as you know that someone cares. When someone is holding your hand, life is easier as I can’t know everything about managing Sickle Cell. Caroline gives me expert advice so that Sela won’t have to go through something as serious as a stroke again.”
“Caroline is like a guardian angel who tells me how to manage Sela’s condition when I didn’t have a clue what to do with him. She has really boosted my confidence. Being a working mum with a child with a lifelong condition has been a real challenge but she has helped me through. I don’t know how I’ve managed to keep my job. She makes a lot of things possible such as getting food delivered during COVID – I didn’t expect it, but she just stepped in and sorted it out.”
What are your hobbies and what do you want to do when you leave school? Sela: “I really want to be a pilot. In year 7, someone came to our school who talked about being a pilot and it really caught my attention. I also love cooking anything and everything! Lasagne is my signature dish – I add all different types of cheeses – I can’t name most of them.
Jacqueline: “Every day I have to get some new ingredient. Sela has to try a new recipe or technique from Gordon Ramsey! Sela is housebound due to COVID at the moment so I have to do all the running around but the fact he loves cooking is great as it takes a lot of weight off me.”
How does Caroline, your Roald Dahl Nurse, help you? Sela: “Caroline is so good to me. She organised an event for me to attend – a Sickle Cell workshop for people who have Sickle Cell like me. Basically, I got to talk to people who know how I feel. It’s good to talk to others as it makes me feel that I’m not alone. Caroline is always there when I come to hospital and she asks how I’m doing and if I’m studying enough! It makes me feel safe to know that she will be there and is checking in with my mum to see if I’m ok. Having blood transfusions is ok – I’ve got used to it. You can’t move around when you have them – it’s like being stuck at home so you need a book or someone to talk to.”
Jacqueline: “Caroline has been a great help with Sela’s transfusions. At the beginning, he would be in a lot of pain because he hasn’t got good veins but Caroline had a chat with me after seeing Sela was in pain and she gave me some really good advice about what he should eat and drink before and he has been having smooth transfusions since. In fact, he often enjoys it as there are a lot of nurses for him to talk to! In fact, he talks so much, they are glad he has to wear a mask because of COVID!”
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