A GIRL with a genetic disease that causes progressive loss of movement will be able to go on holidays with her family thanks to the fundraising efforts of a group of cyclists.

Rhian Rees, five, was born with Spinal Muscular Atrophy (SMA) Type 1, which causes muscle weakness and leads to a progressive loss of movement.

Her mum, Chloe Terrell, said: “Normally children with her condition do not live past the age of two.

“She has never been able to walk, but she can move her legs and arms a bit. When she was a baby, she was like any other baby.

“She used to eat loads and was really good at talking. She was saying sentences at nine months.”

The mum-of-two, from St. Johns Terrace, in Crosskeys, said that when Rhian was one, she had her first chest infection and that she was diagnosed with SMA when she was 14 months old.

“We had a rough time this last Christmas but she has been ok recently, she has pushed through her chest infections,” she said. “She gets them because her muscles are so weak they can’t fight the infection off.”

After hearing about Rhian, Dave Tanner, an ambulance driver for non-emergency situations, decided to organise a fundraiser for the family.

As a result, a group of cyclists rode 35 miles from Brecon to Pontypool earlier this month, raising nearly £2,500.

The money will go towards funding a one-week holiday for the family at Devon Cliffs in Exmouth this July.

The family will be staying in a caravan and have also been given £300 worth of vouchers so they can buy new clothes for the children.

They have also been given £400 to spend during the holidays.

Mr Tanner, 61, said: “We wanted to do something to cheer her up and we thought sending them on a holiday would be nice.”

“We are really looking forward to it, it will be so nice,” said Miss Terrell, 25. “It will be nice to get away.

“We would like to say a big thank you to everyone, it was such a shock when we got the phone call saying they wanted to do this fundraising for us.

“You do not get things like that every day, we have never been offered anything like this before.”

Additional money raised which won’t be used for the holiday will be donated to the children’s ward at Newport’s Royal Gwent Hospital and the charity SMA Support UK.