Mum on a mission

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

- Sarah Rodi

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 hemoglobin, 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.