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Chatham dad ran virtual Virgin Money London Marathon for Treacher Collins charity


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Bullying became part of everyday life for Neil Dixon growing up.

Born with the rare Treacher Collins Syndrome, he became an easy target for playground yobs.

Emily White, Neil and their son Riley. Picture: Emily White
Emily White, Neil and their son Riley. Picture: Emily White

The genetic condition, which is believed to affect just one in 50,000, results in undeveloped facial features and profound deafness.

Although it remains hard, the 38-year-old has had to get used to people staring at him whenever he is out and about.

The challenge he faces is shared with his son Riley who was born with the condition three years ago.

Neil said: "I felt like the only one growing up. There was bullying when I was at school. It came part of everyday life.

"It is not right I know, it was just how it was. It can be quite hard with the staring. I look different."

Riley like his dad has Treacher Collins syndrome. Picture: Emily White
Riley like his dad has Treacher Collins syndrome. Picture: Emily White

Treacher Collins can be detected before birth but it is not until after that its severity is known.

Neil, of Yarrow Road, Chatham, says Riley is still at a very young age where other children are oblivious to how he looks.

His big hope is that he will not have the same experience in education as he did.

He added: "It can be quite lonely at times being the only one in my area that I know of.

"I am completely deaf without my hearing aids; if there is a noisy environment I struggle to hear.

Neil running the Maidstone marathon. Picture: Emily White
Neil running the Maidstone marathon. Picture: Emily White

"Maybe if I have asked two or three times for someone to repeat themselves, I just kind of pretend to know what they said."

Riley, who also uses a hearing aid, suffers from narrow airways and at just three months had a tracheotomy – a hole cut into his throat to help with breathing.

Before this, he had to be blue-lighted to Evelina Children's Hospital in London when his oxygen levels dropped and his lips went blue.

Neil said: "It was so hard. The hardest thing was he was then non-verbal. All the little giggles, cries and noises we were hearing went. Seeing him cry and not hearing the sound.

"As hard as the decision was and seeing him, it was the right thing for him."

Neil's Strava run route. Picture: Neil Dixon
Neil's Strava run route. Picture: Neil Dixon

Riley attends Kings Pre-school in Walderslade and has started to get his speech back, although it is delayed now, meaning he is a couple of years behind others his age.

A week-and-a-half after his operation his smile came back and nurses referred to him as "Smiley Riley".

Desperate to do something positive to help other people living with the condition, the dad-of-two took part in the London Virtual Ultra Marathon earlier this month.

He rain a course between Medway and Sittingbourne – joining 24,000 people around the world, running in their home areas.

He completed 32.2 of the 35 miles with his partner Emily White completing the remaining three.

Neil is now a committee member for the Treacher Collins family support group
Neil is now a committee member for the Treacher Collins family support group

They raised £617 for the Treacher Collins Family Support Group, which offers advice and understanding on the syndrome.

Neil's parents were founding members of the group in 1987 and sat on the committee at a time when there was not a lot of information or research available.

He added: "The charity has helped me know that I am not alone and I hope it can do the same for Riley growing up too."

People living with the syndrome have a 50-50 chance of passing it on to their children.

Neil's second child – 11-year-old Harley – wasn't born with it.

For more information on the charity, visit its website.

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