How far would you go to protect your child? Reading-based mum, Hayley King, single-handedly launched a sickle cell awareness charity in 2012. It hasn’t been an easy journey, but the charity is set to embark on a new campaign. Hayley tells our feature writer, Louise Chandler, all about it and why she is compelled to spread the word about the blood disease that affects millions of people around the world.
Sickle cell is a spontaneous illness which many people don’t understand. What surprises me most is how few people really know what it’s all about. We need to break the myths and stigmas. A lot of the families with sickle cell are from BAME (Black and Minority Ethnic) descent. There is a myth around BAME families that sickle cell is a curse on the family. A lot of families don’t want others to know they have it and that’s our biggest challenge. The Cianna Smile charity wants to give facts and information to break down taboos!
Hayley’s passion to raise awareness about the illness is based on her personal experience. Her daughter, Cianna, was diagnosed with the illness when she was born prematurely at 11 weeks, weighing only three pounds.
When Cianna was three days old, the doctors conducted various tests and she was diagnosed with sickle cell. I was shocked and even though you know the statistics – you never think it will happen to you. Cianna spent four weeks in the Special Care Baby Unit at Royal Berkshire Hospital in Reading and I was terrified.
The doctors told me that Cianna will experience severe pain from time to time called ‘crises’ and this means she’ll need to be admitted to hospital. Life carried on as normal until Cianna started Primary School. Her first half day at school had gone really well but by 6.30pm she was in agony, screaming uncontrollably and was really sick. Cianna was admitted into hospital, she was on the high dependency ward and given morphine to help with the pain during her first crisis. I was terrified. A lot of staff in hospital at the time were not educated enough to give her sufficient treatment.
When Cianna was discharged from hospital we started to interact with the Paediatric consultant who specialized in sickle cell and also with the Haematology nurse. We were bombarded with flyers and leaflets but other than that – there wasn’t a lot more help. I knew I wanted to make a difference and do something that would raise awareness.
I am proud of the difference we are making to children and parents.
Living with sickle cell
Up until she was six, Cianna didn’t have a clue about her illness and we kept the explanation very simple with instructions such as drink water, eat your fruit and vegetables.
In April 2017, it was agreed that Cianna will need to have her spleen removed and it finally opened her eyes to the fact that she has a serious illness because she couldn’t breathe properly, walk and she had a catheter.
I think we’ve loosened the reigns more as she becomes a pre-teen, she’s 11-years-old now. We have to accept that she has to live a normal life and we’ve never wrapped her up in cotton wool. We tell her she is responsible for her actions. If she doesn’t want to wear her coat at playtime, she knows that could make her sick, so she has to be a bit more responsible and make good choices.
The worrying thing is that Cianna can be fine and then minutes later she might collapse on the floor screaming in pain. People think it can be attention seeking but they don’t realize a crisis can happen that quickly.
Setting up the charity
Our first experience in hospital taught me that I had to be perceptive and ask questions. There’s a lot of parents who feel like they can’t challenge the doctors, so I felt like I wanted to make a change and provide more information. Six months later I started the Cianna Smile charity, in 2012.
The charity offers support to families affected by sickle cell. The small team of volunteers raise awareness of the sickle cell disease by using educational resources and workshops which they offer to families affected by sickle cell, members of the public and health professionals.
It was very difficult in the beginning. I approached a local organization to help me with the admin side of things such as setting up the right bank account and all the admin paperwork. We became a registered charity in 2017. I feel like we have gained a lot more respect and loyalty now that we are a reputable charity and we have come a long way. I run the charity on a voluntary basis, as well as running a business and being a single parent so I juggle a lot.
There are times when I have felt like giving up because it can be hard to attract support then I realize how strong I am, and I do this for Cianna. Within the last six months I started delegating jobs to a team of volunteers, accepting that I can’t do everything.
Charity activity that is making a difference
Living with sickle cell requires a holistic approach to wellbeing, diet and lifestyle so how do you educate a young child to equip them with this knowledge?
The charity is going from strength to strength in their mission to raise awareness of sickle cell and supporting health care professionals as well as families affected by the blood disease and encouraging testing for the sickle cell trait or anaemia.
We host ‘Sickle Cell Action Groups’ and recent feedback tells us that the parents of kids who live with sickle cell, feel supported from attending our sessions, days out and activities.
I am proud of the difference we are making to children and parents.
It’s really beneficial that children have the chance to meet other children of their age who are going through the same thing. It reminds them that they’re not alone with their symptoms and they feel happier, not isolated. They are surrounded by people who can relate to their situation and the challenges they are facing.
I enjoy meeting other families so we can discuss things like medication, and it makes one feel normal. We can share information and advice between us – making a positive change to people’s lives.
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You can still donate blood if you have Sickle cell trait! Cianna's nanny kindly filmed Cianna's Mummy donating blood. Cianna's mummy and nanny are both carriers (have Sickle Cell Trait) and know how important it is to donate blood after blood transfusions saved Cianna's life. Have you booked your next blood donation? If you need more info and/or to book your appointment please contact @givebloodnhs #giveblood #teamciannassmile #ciannassmile #sicklecellanemia #sicklecell #teamsicklecell #savelives
The future looks bright
To help them grow and develop, the Cianna Smile charity is looking for volunteers to help behind the scenes with admin tasks, events and general promotion of the charity.
I would like to welcome new friends and supporters of the charity who want to come and support our events and get involved in the Sickle Cell Action Groups! We have been planning our annual ball and we would love to welcome people to come along, meet, have fun and find out more about the charity!
The charity has received a grant from the Big Lottery fund of £6,900 to fund:
- Sickle Cell Action Group days out
- Our ‘know your trait project’ to educate young adults about the risks of sickle cell and the risks of genetic inheritance if both parents carry an abnormal gene
- Public awareness campaign
- The Cianna’s Smile Black History month talk on sickle cell
- Art therapy bags for children with sickle cell
- Advocacy training day
- Holistic therapy workshops for people affected by sickle cell.
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