Life with Sickle Cell – Aisha, the schoolgirl with dreams of being an artist and future Olympic gymnast
The nine-year-old and her doting mother, Penda, sat down with us during Sickle Cell Awareness Month to talk about life with the condition and the impact it has on family life, school and day-to-day activities.
Aisha said: “People need to talk more about the condition as so many have no clue what it is. It is not being shared enough.
“I like to do a lot of things for fun including ballet and art at home. I like experimenting with colour and learning different techniques. The best thing I have ever drew is anime."
Issy Adams, a Haemoglobinopathy Nurse Educator at our Children’s, said: “Sickle Cell Awareness month provides a spotlight on this lifelong genetic condition.
“Sickle Cell means the red blood cells change shape causing damage to organs and causing painful episodes.
“Understanding how to treat someone with the disease can make a huge difference to their outcomes and potentially save their life.
Aisha is a regular visitor to our Children’s Hospital for her blood transfusion treatment. She has also been with us as an inpatient too.
Her mother, Penda, said: “There is stigma around Sickle Cell. You hear people comfortably saying they won't live long and will find it hard to date, as no one will want to date someone with a genetic condition. As a parent this is hard to hear as you do not want to think that way for your child.
“You can live a very beautiful and healthy life. We like to go on what is being researched on with credible resources rather than what people are saying.
“Sometimes we have had to pull her back from playing outside all day with the neighbourhood kids as it would end up in a trip to the hospital.
“The treatment will improve her quality of life. Her hospital admissions have increased as she has got older and she is requiring more transfusions.
Aisha said: “The biggest challenge is having to come into hospital a lot .
“ Nurse Sophie was really kind and helped me a lot when I was in PAU when I was eight years old. She made sure to check on me frequently to manage my pain and get a little more comfortable.
“The nurses make it more fun as they have different activities. They give me Legos. I build Lego animals and houses.”
Due to Aisha being in hospital so much, she often has to catch up on her Maths, Science and English:
She commented: “Sometimes it affects my learning I get behind in class as I am always in hospital.
"When I am admitted in the hospital I like when the teachers come to see me. It is a tiny bit different to going to school as there are less people around me. I miss my friends when I am in hospital.
Aisha has never let Sickle Cell stop her. She often has to miss school, so she can attend her medical treatments, but despite this she is running for the ‘main council in her primary school class elections and making art for her friends.
She said: “My teachers are really good with helping me because they know the signs when I am not feeling well.
Penda said: “Her teachers have gone to lengths where they are educating themselves about Sickle Cell as a lot of them didn't know what it was. We have had a really good set of teachers for her. They know when her crises are coming and to pick up the phone and call us.
“Last week she had a dizzy spell at school, which was very scary for her as she was worried. She would faint and one of her teachers took her outside to help her.
“When Aisha has a crisis most of it is pain. The pain can happen anywhere in her body. She gets tired and fatigued too.
“Her normal is different from most kids. With Aisha, we have to make sure she is hydrated and keeping warm.
“Sometimes she wants to go outside and play with her sporty big brother, we sometimes have to say no which can be heartbreaking for her.
Penda has the Sickle Cell gene but does not have the condition. She is hoping for more research.
“We weren’t really well educated on Sickle Cell before. There is a mental impact as one minute she is OK and the next she is not. Just the other night she was in A&E with chest pain for five hours. We are learning to work with Sickle Cell and see how we can help up in amidst the impact of the hospital impact.
“We never thought a year ago Aisha would be considered for the transplant. It is nice to see there are improvements in this area.”
Penda shared with us her hopes for her daughter’s future as she is currently being considered for a Stem Cell transplant.
Penda said: “I would hate to see her sickle cell limiting what she can do. I want the research to go further so she can live as normally as possible.
"Aisha is not able to do too much physical activity as it can worsen her Sickle Cell and bring on a crisis.
Aisha said: “I just have to make sure I don’t work my body too much. I sometime miss out on stuff and this makes me feel disappointed. I miss out on sports and this is something I enjoy.
Penda said: “I am excited for her future. With or without the stem cell treatment she will go really far. I am very proud of her.”
For more information about the condition by visiting: Sickle Cell Society