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Deal Town FC hosts charity football match to raise awareness of rare chromosome disorders

Deal Town Football Club will hold a charity football match tonight (Thursday) to raise awareness of rare chromosome disorders.

It will be between two teams from Folkestone-based Saga’s in-house departments – publishing and IT – and is being held in aid of two youngsters, Rhys Hills and Poppy
Rayment, who have different conditions stemming from defects in their genes.

Rhys is 15 months old and has got a micro-deletion in a chromosome, which is causing problems in the early stages of development.

Rhys Hills has a micro-deletion in a chromosome, which is a rare condition becoming more popular in babies
Rhys Hills has a micro-deletion in a chromosome, which is a rare condition becoming more popular in babies

His parents, Rob and Caroline Hills, of Ethelbert Road, Folkestone, say it is not clear what the future holds for their son.

Mrs Hills said: "We knew something wasn't right from the word go.

'We knew something wasn’t right from the word go.' - Mother, Caroline Hills

“But we spent a year at the hospital trying to rule things out.”

He was given a diagnosis in January.

Rhys is very small, has droopy eyelids, and a narrow windpipe which causes respiratory problems. He is fed high-calorie powder to encourage weight gain.

Experts have linked it to several conditions that Rhys may contract or become prone to when he is older, such as obesity, autism and schizophrenia. Mr Hills said: “We are still in the dark as to what this will mean for him in the future.

“Some of it might affect him, and some of it may not.”

Later this year Rhys will have a silicone sling installed in his eyelids so that he is able to open them up properly.

Doctors have decided to do is at a young age so that his eyesight will not affect his balance when he starts walking.

Poppy Rayment has an extra chromosome, which is thought to be a contributing factor to her Downs syndrome.
Poppy Rayment has an extra chromosome, which is thought to be a contributing factor to her Downs syndrome.

Poppy, four, of Brabner Close, Folkestone, has Down syndrome and an extra chromosome, which is thought to be a contributing factor.

Her father, Bradley Rayment, said: “We are in 2015, it is not the same as it would have been in the 1980s.

“But there are changes every day and I can’t look at it negatively.

“She is not walking yet but she is not far off. She is wonderful and she is my world."

'She is wonderful and she is my world.' Father, Bradley Rayment

Poppy is still on bottle feeds and uses a frame to help her walking progression.

Mr Rayment was due to attend the match in her honour but has been forced to decline due to personal reasons.

Proceeds from the match are going to a charity called Unique, which researches chromosomal disorders.

It helps families affected by the disorders, which are still rare and complicated.
Each player is paying £10 for the privilege.

Kick-off is at 7pm and it is free admission.

Donation buckets will be circulating throughout the game and refreshments will be available.

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