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Rio Newman, 3, of Kennington, Ashford, diagnosed with rare growth condition macrocephaly capillary malformation (M-CM)

A mum has spoken out about her son’s rare syndrome and the mystery surrounding his disability.

Three-year-old Rio Newman, from Kennington, Ashford, is one of only 130 people worldwide to be diagnosed with macrocephaly capillary malformation (M-CM).

The extremely rare disease is a multiple malformation syndrome causing abnormal body and head overgrowth and abnormalities of the skin, vascular system, brain and limbs.

The youngster has longer legs and toes, one side of his face is larger and he has port-wine stains on his hands, legs and face.

He also suffers with global development delays (GDD) and suspected autism.

Mum Claire Chalk said: “It’s such a rare condition that very little is known about it.

“He was the first child in the hospital to be diagnosed with it.

“The doctors knew there was something different about him straight away.”

Rio was diagnosed when he was just days old by a team of doctors but the family have faced more questions than answers.

Although he can make sounds, he cannot walk or talk yet and no one knows for certain if he ever will.

Claire, who has two other sons – Bailey, seven, and Archie, five – with fiancé Daniel said: “It upsets me sometimes because I do not know what sort of life he is going to have.

“I don’t know what life holds for Rio and that makes me feel sad more than anything.

“It is frustrating not knowing. I just want to raise awareness of his condition so we can find out more about it.”

Rio with mum Claire
Rio with mum Claire

Rio needs special therapies including physical, occupational and speech. He also must have regular scans and check ups.

Claire, who works part time as a panellist for Ashford-based fragrance and flavour manufacturer Givaudan, said: “I don’t know how I manage to fit it all in the day to be honest, I am forever taking him to appointments.

“But we are very lucky because we have an amazing support group of friends, family and nurses around us and have had that support from day one.

“Rio is such a happy little chap and I wouldn’t have it any other way. I’m just a mum who wants the best for her children" - Claire Chalk

“Rio is such a happy little chap and I wouldn’t have it any other way. I’m just a mum who wants the best for her children.”

Claire and Daniel need to raise £2,100 for a special car seat for Rio.

The pair are holding three fundraising events, one for the public and two just for friends and family.

Anyone is welcome to a three-hour fitness fundraiser on Sunday, December 7 at the North School in Essellacorr Road, Ashford from 9am to noon.

There will be three fitness sessions with a difference – Totally Shredded, FightKlub and Circuits are all in darkness with disco lights, lasers and nightclub music.

The charity session is £15 for all three classes and all money raised will go to Rio’s fund.

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