Little Isaac Hughes, aged 9 from Wales, was born with the rare condition Moebius Syndrome, meaning that he can’t smile – no matter how hard he tries.
There are just 200 people living with the rare disorder in the UK, which affects the cranial nerves and causes paralysis of the face.
Isaac’s family first realised there was a problem when he struggled with feeding, and he was diagnosed with Moebius Syndrome at just 6 months old.
As he got older, Isaac found it difficult to speak, and also struggled to get to grips with sign language due to his lack of muscle tone and small hands – both of which are common in sufferers of the syndrome.
Despite not saying his first words until he was 7 years old, Isaac’s family have had no trouble understanding him, and he found plenty of different and clever ways to tell stories and communicate with his family. He has settled in brilliantly at his mainstream school, and isn’t afraid to dream big – he hopes to be a footballer when he grows up.
Smile surgery is an option for Issac, and the family has met with Consultant Plastic Surgeon Adel Y Fattah, to talk about the options available. It’s a difficult decision to make, and not all families are willing to make such an important decision on behalf of their child.
It’s a huge and complex operation, involving either linking the mouth to working muscles in the temple or by inserting a small piece of muscle from elsewhere in the body, such as the thigh.
Talking about whether Isaac should have the operation, his mum Ceri confessed, ‘being a parent is hard, but being a parent to a child with a rare condition where there isn’t the general information or knowledge out there, is that much harder.’
The family aren’t willing to rush into surgery just yet, and in the mean time have set up a charity called Same but Different, to help others suffering from rare disorders. They use photography to try and ‘capture the essence of the person’ – something that is hugely important for people who struggle to express themselves.
Proud mum Ceri is full of admiration for what Isaac has achieved – and dad Phil says, ‘I just want Isaac to live a normal life.’ With everything this brave lad has overcome already – we have no doubt he will continue to do just that!