1205. Hayley King
Hayley King, from Reading, is the founder of ‘Cianna’s Smile’ which offers clear, practical information and support to families affected by sickle cell disease.
After finding out that her daughter, Cianna, had sickle cell disease at only a few days old, Hayley realised that there was limited information on the condition and became dedicated to supporting others facing similar challenges. Her advocacy training programme offers supporters the knowledge, skills and understanding to become a sickle cell advocate. Another key part of Hayley’s work is to reduce the isolation experienced by those affected by sickle cell, by offering days out for the families in the Thames Valley area. Every 3 months ‘Cianna’s Smile’ takes up to 25 people out for a family-friendly activity. ‘Cianna’s Smile’ has been an NCS community partner for three years running.
Hayley’s award coincides with World Sickle Cell Day, the annual day to raise awareness of sickle cell disease.
In a personal letter to Hayley, Prime Minister Theresa May said:
“Through ‘Cianna’s Smile’ you are creating an important community for families like yours, providing invaluable advice and support. The days out you organise for families affected by the disease are vital in tackling loneliness and providing a wonderful treat for the families who benefit.”
“I am extremely honoured to be recognised as one of the many valuable volunteers who dedicate their time to help others. ‘Cianna’s Smile’ sickle cell awareness charity aims to raise awareness of the effect Sickle Cell Disease has on the lives of children with the condition and provide support for themselves and their families. I set up the charity because my daughter Cianna has Sickle Cell and I was astonished at how few people knew about the disease or had not even heard of it. When Cianna had her first sickle cell crisis, watching her suffer was heartbreaking. I just wanted to help other families, who were going through the same thing. Sickle cell is a genetic blood disorder that can cause many life threatening complications. As a charity we fundraise to enable us to organise family days out for children with Sickle Cell. These days out gives them the opportunity to meet others facing the same challenges they themselves might face. One of the most rewarding parts of my voluntary work is seeing all the families excited and making new friends. Sickle cell is one of the most common genetic conditions in the world and we are proud to be making a difference for those affected by it.”