MATTHEW

“It was a huge struggle, for Matthew in particular, from the moment he was born. He had many infections and initially needed a ventilator to help him breathe. Despite being the smaller of the two twins, Elin thrived and has not had any of the medical issues experienced by Matthew.”

Matthew and his family came to the studio to talk to us about their experience of rare disease.

“The lowest point came when Matthew was one month old. The consultant sat us down and said they could not do anything and it would be up to Matthew if he was strong enough to survive.  It was an extremely anxious time but his fighting spirit got him through.”

“Whilst in hospital Matthew was diagnosed as being deaf but it was not until he was 12 months old that we were told he had Crouzon Syndrome. Crouzon syndrome is a genetic disorder characterized by the premature fusion of certain skull bones (craniosynostosis). This early fusion prevents the skull from growing normally and affects the shape of the head and face. At 2 ½, Matthew had a cochlear implant on his right ear only as it is not possible to do both sides with Crouzon Syndrome. As long as he wears his implant he is now able to hear. With intensive speech therapy Matthew is making huge progress with his speech”.

It is expected that he will need reconstructive and orthodontic surgery which will also improve his breathing and appearance. This surgery has huge ramifications in terms of the physical changes and Matthew and his family will be offered psychological support to cope with this.

“Whilst out walking in Moel Famau some children called Matthew ‘freaky’. The most upsetting part of this was the reaction of the parents. Instead of taking the time to explain to their children that not all children are the same they just hurried them away and occasionally looked back at us. This was extremely upsetting and had they taken the time to explain or even talk to me about Matthew’s condition it could have had such a different outcome. It is for this reason we are extremely supportive of the Rare Project by Same but Different as with greater awareness comes acceptance.”

Whilst he has experienced many battles in his short life Matthew has not let his condition hold him back in any way.  He is such a positive boy and a huge inspiration.