Brave Tayshelice named Young Advocate of the Year for championing sickle cell awareness
A brave nine-year-old Birmingham Children’s Hospital patient is doing all she can to raise awareness of the sometimes ‘hidden’ sickle cell disease (SCD) – a serious and lifelong condition that affects red blood cells.
Tayshelice from Kingstanding is one of the approximately 15,000 people in the UK that lives with SCD but, despite the sometimes debilitating difficulties it brings, she is already making her mark by campaigning in her local community to ensure awareness increases.
Mum, Tameka Hewitt, said: "My husband and I both have sickle cell trait, so we knew there was a chance our children would develop it. We have five children, but only our daughter Tayshelice inherited SCD."
Tayshelice had a heel prick test when she was a baby, which revealed she had the condition. She was then transferred to the Children’s Hospital’s specialist sickle cell centre, one the biggest of its kind in the country caring for around 500 children and young people.
SCD, which tends to affect people of an Afro-Caribbean heritage, produces unusually shaped red blood cells that do not live as long as healthy blood cells and can block blood vessels. Tayshelice attends the hospital regularly for treatment and blood transfusions to treat the disease.
It can cause painful episodes called sickle cell crises and can also cause an increased risk of serious infections, anaemia, which can cause fatigue, strokes and lung problems.
Tayshelice explained: "On the outside, I look fine, but on the inside, it's really difficult and overwhelming. It sometimes feels like a stabbing pain and I’ve had headaches that feel like there’s glass in my head. The pain is so bad that sometimes I have to go to hospital."
During her life, Tayshelice has also needed treatment for a lung infection and MRSA due to her weakened immune system.
Mum, Tameka, added: "In 2022, we noticed that Tayshelice couldn't hear as well as she used to as she kept asking us to repeat ourselves and was starting to lip read. We knew something wasn't right, so we took her to the Children's Hospital Emergency Department."
A subsequent MRI scan revealed her daughter had had two ‘silent strokes’ due to blood flow to her brain being blocked.
Tameka said: "It was really devastating. We were so worried about her, but she was well looked after by the staff, who arranged an urgent blood cell exchange."
A blood cell exchange is a type of blood transfusion where red cells are removed with the help of a cell separating device and then replaced with non-sickle red cells from a donor.
Thankfully, following treatment by the team at the Children’s Hospital, Tayshelice is recovering well and her hearing is returning to normal.
Mum said: "Tayshelice does get upset when she is in hospital as she has to spend time away from home, but she keeps herself busy through uploading videos to her YouTube channel."
Tayshelice wanted to raise awareness of SCD, as it's not a commonly known or understood condition. She started a YouTube channel and even read stories about sickle cell in the local community, her church and nursing homes. She has also started fundraising campaigns at her school.
She said: "I wanted everyone at school to learn about sickle cell and raise money for the charities that have helped me, so I wrote to my Head Teacher to ask if I could organise a mufti day. They said yes and we raised over £300.”
Following her outstanding work, Tayshelice was named ‘My Friend Jen Young Advocate of the Year’ for sickle cell awareness and will be presented the prize at the Progression of Sickle Cell Conference this summer.
Tameka said: "She's had to deal with so much at such a young age, but she is so resilient and takes everything in her stride. We are so proud of her for using her experiences to teach the world about sickle cell and help other children living with the disease."
Amanda Cope, Advanced Nurse Practitioner for Haematology, who helps to care to Tayshelice, said: “She is a little star. She’s had a really rough time having to deal with some severe pain but she always soldiers on. She’s such an inspiration and we’re all so proud of her.”