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19 June marks world sickle cell day, a day where charities and people come together to raise awareness of the invisible condition affecting 15,000 people in the UK. We spoke with Adeola, mum of eight-year-old Elizabeth who has sickle cell disease.
What is it like for Elizabeth, living with sickle cell disease?
“Elizabeth’s sickle cell means she has to stay warm. We try to avoid her getting infections, and we go to lots of medical appointments. Because of this, everything we do as a family is mostly indoors, especially in winter.
“Elizabeth can become tired easily, but sometimes she is desperate to play with her friends or stay outside for longer. It is hard, because I want to see her happy but she also needs to be healthy and staying outside in the cold or running around too much can send her into crisis. I do everything I can to keep her and Testimony, her brother, happy inside, so we do lots of painting, crafts and games together.”
“When I can afford it, I buy as many new toys as I can to keep her happy inside. I even let the kids ride their scooter inside if it means Elizabeth stays warm!”
What moments are most difficult for your family?
“When Elizabeth is having a crisis, or is in lots of pain, we have to go to hospital. I explain to her that it’s not her fault. She is afraid of the hospital because she knows they may have to put a line into her arm so they can give her medication.
“Her little brother, Testimony, is very caring. He tells the doctors to be careful with her, if they are struggling to insert a line into her arm. He also always wants to come to her medical appointments.”
How did Family Fund support your family?
“I applied for a laptop for Elizabeth. When I received the email saying we had a grant, I couldn’t believe it. I was so surprised and happy. It showed me that people do things from their heart, and I am so grateful. The laptop keeps Elizabeth entertained and happy at home. She plays games, and watches videos, which is such a relief for me.
“I also received a grant towards a new bed. My bed was broken, because it was old and sometimes we all sit on it together. When Elizabeth is poorly, she likes to stay with me in my bed. It would have taken a long time to save up for a new bed. So I’m so grateful that Family Fund helps, because there are other people like me going through a lot too.”
At Family Fund, we support families raising disabled or seriously ill children and young people by offering grants for items they struggle to afford. We make a real difference to families like Elizabeth’s. Discover if you are eligible to apply here.
Elizabeth isn’t alone.
There are thousands of children like her, whose parents have to work extra hard to keep up with their child’s health and wellbeing, and earn an income.
Whether families need a laptop, a new fridge or a family break, your kindness can make a real difference. Please donate what you can today.
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Our Family Fund grants
You can apply for a Family Fund grant if you are the parent, or carer, of a disabled or seriously ill child or young person up to the age of 24.