September officially marks Craniofacial Acceptance Month.
And the Barber family want more people locally to know about their sons’ condition after moving to Mablethorpe was said to be ‘the best decision of their life’ having left Coventry due to their eldest son being bullied.
Bailey,14, and Matthew Barber,three, both suffer from a rare conditiion called Saethre-Chotzen syndrome.
This is a genetic condition characterized by the premature fusion of set skull bones (Craniosynostosis).
It prevents a child’s skull from growing normally and affects the shape of their head and face.
It can also cause further long-term complications such as difficulties with learning development, hearing, speech and eating.
Dad Darren, like his two sons also has the condition, but their daughter Catherine does not.
Now Darren and mum Mary want to help raise further awareness for their sons.
Mary told The Leader: “This genetic disease is quite rare, especially in this area. We only know of one other child in Lincolnshire that has this same condition.
“We moved to Mablethorpe from Coventry nine years ago after Bailey was bullied at school for looking different, to see him so unhappy was heart breaking.
“But for us, moving to Mablethorpe was the best thing we did.
“Bailey is now so much happier and everyone we meet here in the town is really kind and accepting.”
Mrs Barber added: “It is really tough for us, even my daughter, Catherine is classed as a carer because she helps out with the boys. But we are really lucky to have a great support system here.
“Now we just want to raise more awareness about the condition and for people to not be afraid by a child who looks a little bit different.”
For more information about these facial conditions, visit: www.headlines.org.uk.