Belfast Telegraph

Wednesday 22 October 2014

Nicole enjoys first school meal in a year with her pals after trust's U-turn over solid food ban

A young girl with a rare genetic disease has eaten her first school dinner in a year alongside her classmates, thanks to the Belfast Telegraph.

Little Nicole McBride from Londonderry who suffers from Ataxia-telangiectasia (AT), which affects her muscle capacity, had been banned from eating solid foods after a speech and language therapist expressed concerns that she could choke.

On Monday the delighted nine-year-old tucked into a plate of mashed potatoes, chicken and gravy at St Eithne's Primary School and a bowl of soup on Tuesday after a U-turn by the Western Health and Social Care Trust.

It came just weeks after the Belfast Telegraph published the story of Nicole, whose parents took her fight to the High Court.

Nicole, who had no history of choking, had refused to eat the new pureed diet that she had been put on in January 2012.

Her furious parents – who continued to feed her mashed and cut up solids at home – had been forced to take Nicole out of school twice a day to feed her as the school would only allow her to eat pureed food.

Nicole's mother Shona said: "I think it was the story. Within weeks of the Belfast Telegraph putting that story in the paper they had responded.

"If it hadn't been for the story, we would still be waiting on the meeting. I am glad I spoke out."

Shona, who received the good news last week, said: "It is great news that we have got this food ban lifted."

Nicole is delighted to be eating alongside her classmates again after having to be fed in the back of her mobility van at break time and at her home at lunchtime while her friends were in school.

Shona said: "She loves being back on solids. She is just over the moon and excited. Monday was her first day back at school and she came home bouncing. I am so pleased that everything is back to normal for the wee'un."

Nicole, whose life expectancy is between 16 and 21 years, has also put on two stone, which her mum attributes to her determination to keep feeding her solids at home.

"She has turned a wee corner," Shona said. "The extra weight will make her stronger, less tired and help her to eat better. I have no doubt she has put on the weight because we have been feeding her solids at home."

Factfile

Ataxia-telangiectasia (AT) is a rare and complex genetic disorder. Sufferers have difficulty in controlling and co-ordinating movements, a reduced immune system, an increased risk in developing cancers and increased sensitivity to X-rays and similar radiation. AT is caused by a defect on a particular gene meaning it can't produce a protein called ATM. When ATM is absent or not working this gives rise to the wide range of symptoms of AT. When two people carrying the mutated gene have a child both pass on the mutated gene and there is a one in four chance the child will be born with AT.

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