At just 14 months old, our little daughter Lucy was diagnosed with metopic craniosynostosis. Craniosynostosis is a rare condition, affecting about one in every 3000 babies born in the UK. It means that two or more of the plates of a baby’s skull have fused together too early, preventing the head from growing properly. As the baby grows, the condition causes an abnormal head shape, and can cause other effects such as raised pressure on the brain, vision and breathing problems, headaches, and developmental delays.
Because craniosynostosis is so rare, there are only four specialist centres in the UK which treat it. Most affected children undergo major surgery at one of these centres shortly after their diagnosis, sometimes when they are only a few months old.
We’re here on GoGetFunding to raise £5000 to set up a registered charity called Lucy’s Head Start. The charity will raise funds to support children with craniosynostosis (and related craniofacial conditions) and their families. We want to assist families who are struggling to get the correct diagnosis, and help with travelling costs to visit specialist centres for assessment and treatment. We also want to raise awareness about the condition, both among families and health professsionals. Sadly, many children (like Lucy) are currently diagnosed very late, due to a lack of awareness about the condition. This reduces their treatment options and increases the risk of complications from raised pressure inside the skull.