Cianna’s Smile - charity helping children with Sickle Cell Anaemia
PUBLISHED: 00:00 10 March 2020
When Hayley King discovered her daughter had a rare genetic condition, she decided to take action and help to raise awareness of the disease by setting up a charity.
No parent wants to see their child suffer, so when Hayley King gave birth to Cianna 11 weeks early and found out her daughter had a rare genetic condition, she knew she had to learn everything she could about the disease.
"Cianna was diagnosed with Sickle Cell Anaemia at three days old. Cianna was tested because during my pregnancy we discovered her father and I were carriers of the gene. We learned it is a largely unknown disease that causes severe pain episodes (a Sickle Cell crisis), leading to immediate hospital admission and treatment. We were devastated for Cianna and worried about how we'd cope," says Hayley, a silversmith from Earley in Reading.
Sickle Cell Anaemia affects haemoglobin, causing the red blood cells to take on a rigid "C" or sickle shape. Sickle cells can get stuck and block blood flow to organs causing complications, pain and decreased oxygen levels. Some cases can cause stroke, acute chest syndrome, organ damage and blindness. It is estimated that between 12,500 and 15,000 people live with the life-long and debilitating condition in the UK.
"Cianna didn't have any symptoms until she was four," says Hayley. "It was her first day at primary school and afterwards we went to a friend's house. Cianna suddenly started vomiting and screaming in pain. I panicked and rushed her to A&E, but the doctors thought she was constipated so sent us home. I knew it was something more, so I took her back and said I wasn't leaving until they investigated further." The doctors took various X-rays and did some blood tests.
"It turns out she had a crisis in her spleen and pneumonia. I hate to think what could have happened if I hadn't taken her back to hospital... and other parents, who aren't aware of the symptoms of Sickle Cell Anaemia, may not have felt confident to challenge the medical experts," says Hayley. "This got me thinking... I thought other parents might be going through the same worries we were, so I was inspired to raise awareness of the condition and offer support."
Berkshire based charity Cianna's Smile was born shortly afterwards, with the aim of helping people to become more knowledgeable about the blood condition. "That was seven years ago," says Hayley. "And now our small team organises action groups, days out for families affected by Sickle Cell, alternative therapy workshops and free advocacy training days. The core purpose is to explain the facts and dispel myths. For example, there is a misconception that people with Sickle Cell don't live to a good age, but this isn't true. With healthcare being more readily available to more people, doctors are able to help manage the condition."
Hayley says she feels lucky to live in Berkshire with all it has to offer. "The family days out we organise here are just magical. It's so nice for the children to interact with others who suffer from the disease. And it's great to meet other parents going through this. I make sure they know I'm always at the other end of the phone," says Hayley.
Former Prime Minister Theresa May awarded Hayley and the charity with the Point of Light Award last June, and the charity also received a National Lottery Community Fund grant for £6,900 in order to organise monthly coffee mornings for Sickle Cell patients, advocacy training days, public lectures, awareness wellness days and educational talks for students.
As for Cianna, she is now 12 and has a sibling, Taeo, aged six, who doesn't have the disease. "Sickle Cell Anaemia is an invisible condition," says Hayley. "Cianna seems like a healthy girl as we aim to prevent the symptoms, rather than wait to treat them. We make sure she drinks two litres of water a day and takes antibiotics and folic acid to prevent infection and help produce new red blood cells. Dehydration and stress can trigger a crisis.
"These days when she does get poorly, I can spot the signs and get her to drink lots, rest and we increase her pain medication. When she has a crisis this requires hospital admission and is classified as an medical emergency.
"One known cure is a bone marrow transplant but finding a match, and the chance of success, is a risk. We also have high hopes for gene therapy in the future. But for now, we will continue to raise awareness of the condition through our charity. I'd love to have a base for Cianna's Smile; somewhere we can offer support, nutritional advice and workshops. We will keep striving for this.."