A 15-year-old girl, who was the first in the UK to undergo Casgevy treatment for her life debilitating sickle cell disease, rings the bell to mark the end of her treatment at Royal Manchester Children’s Hospital (RMCH).
Aisha, from Cheadle, has had sickle cell disease since she was born and suffered regular, severe crises, and was attending emergency departments for treatment, including medication and blood transfusions, as regularly as every two weeks.
Aisha said: “I’ve not known life outside of being in hospital and it’s prevented me from doing a lot. I have really painful episodes which affects my social life, I have really low attendance at school and it prevents me from having a normal life.
“My sickle cell crises start off as a tingling pain in an area of my body; it can be my shoulder, my leg. The pain then grows to flashing and pulsating and spreads across my body. Almost like hammering and chiselling on your bones.”
Sickle Cell Disease, which mainly affects Black African and Black Caribbean communities, can cause severe pain, strokes, organ damage, and heart failure. Around 15,000 people in the UK live with the condition, which has a major impact on their daily lives. Stem cell or bone marrow transplants can offer a potential cure for some people with sickle cell disease, but they are usually only considered in specific circumstances where symptoms are severe and other treatments have not worked.
In February 2025, Casgevy, a gene-editing therapy where the patient’s own blood stem cells are edited, was approved for use across the NHS by the National Institute for Health and Care Excellence (NICE). As Aisha’s condition was so severe, the healthcare teams at RMCH advocated for her to be put forward for the therapy, which was then raised to be discussed with regional and national sickle cell panels.
Hamdat, Aisha’s mum, said: “When the hospital came to me to ask if we would be interested in the treatment, I had to read medical journals just to understand what I was saying yes to. But I also understood the risks of not doing anything for my daughter. The teams were great – they listened to all my concerns and they delivered.
“I also have sickle cell, so I understand her pain and I didn’t want her to live her life suffering so much.”
Aisha said: “I really like school and I was conscious that as I was in Year 10 that I was coming up to really important years in school and college. After lots of conversations with my mum and the hospital, I made the decision that I would rather sacrifice the time now.
“Once the cells were ready to be transplanted back to me, I was admitted to hospital for two months for my transfusion. My immunity was so low only my mum was allowed to be with me. My brother would come and wave to my window – he’s my only sibling so I missed him a lot, along with my friends from school.
This was a big decision for Aisha and Hamdat. Whilst Casgevy is much safer than a bone marrow transplant as it uses the person’s own cells, the process is still intense for a child. It involves a cycle of collecting cells – it is recommended that they need about 22 million cells – which are then sent to the Netherlands to be edited and takes around six months. Aisha’s own edited cells are transplanted back to her alongside chemotherapy treatment.
“I lost a lot of my hair, my muscles were weakened and I was on feeds as I couldn’t eat. It was a really difficult process, but I was pretty determined to keep a similar structure to school, and the Hospital School were great in adapting to my needs and whether I felt well enough to learn”.
On 29 June 2026, Aisha was discharged from hospital and has been recovering at home. She is now back at school as a prefect in her final year of secondary school. Helping others understand sickle cell disease is important to Aisha. She has regularly spoken about the impact of her condition where she can.
Aisha said: “Because I’ve missed a lot of school over the years, I’ve always tried to overcompensate and be as involved as I can. Since I was in year seven, I looked up to the prefects who showed us around the school and just knew that was a role that I would aspire to be in, and now it’s finally happening!”
Aisha has now rung the bell to mark the end of her treatment. Whilst she is still receiving care from the 
hospital, for help with her ongoing muscle pains which were caused by damage through sickle cell, she no longer has symptoms and does not have crises.
Hamdat said: “It’s been a long journey to get here and I’m so proud of my daughter. I hope Aisha can be on her way to start living a more normal life”.
Srividhya Senthil, Consultant Paediatric haematologist, said: “For people like Aisha who live with sickle cell, life can be tough. They have a poorer quality of life, are in and out of hospital with painful crises, have various appointments with specialists and can even have a reduced life expectancy.
“Casgevy is a transformative treatment, and it feels wonderful to know that Aisha’s life has changed. She has a good immune system, she’s back in school and leading a very normal life. I am particularly hopeful that this will become more available for younger children and that there is more in the pipeline to cure people of sickle cell.”