Matthew Hogg and his twin sister Elin from Mold were born at 26 weeks. Matthew was 1kg and Elin 950 grams when born and they spent 11 weeks in SCBU at the Countess of Chester hospital.
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. His mother, Monica Hogg explains more…
“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, 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 two-and-a-half years old Matthew had a cochlear implant on his right ear, it’s not possible to do both sides due to Crouzon Syndrome but 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 too.
“Matthew is aware that his appearance is different but accepts the way he is. He is extremely happy, energetic and has a love of all things football. His ambition is to play for Real Madrid or Manchester United but he is yet to decide which team to approach!
“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.”
Same but Different have been awarded £5,000 from the National Lottery Community Fund’s Awards for All Wales programme to raise awareness of rare diseases and syndromes by developing high-quality profiles and case studies of members and their families who live with rare conditions, and publishing them on the internet.
Ceridwen Hughes, of the project said: “On our website we have set up a gallery to highlight people like Matthew who have rare diseases. You can see beautiful portraits and read about how they cope with their conditions.
“It is extremely positive whilst also giving people a brief glimpse into the condition. We are extremely grateful to the National Lottery Community Fund for their support with this project.”