Sale mum awarded British Empire Medal in Queen's Birthday Honours

Helen Bedford-Gay set up FOP Friends, a network for those affected by Fibrodysplasia Ossificans Progressiva, after her son was diagnosed with the disease.

FOP is a medical condition which sees patients' muscles and other connective tissue turn to bones.

There are around 70 cases in the UK and no treatment, although certain clinical trials are ongoing.

When Helen's son Oliver was diagnosed with the disease, there was also no charity in this country.

But this all changed when she and husband Chris set up a network of their own.

Helen, who set aside a career as a teacher, said: "There were a couple of families in a group, but there wasn't a charity. Over the years, we have built up the charity and connected the community.

"When you have children and then something like this happens, it takes you in a different direction."

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After a child is diagnosed with FOP, parents are often advised not to search for it online as the results are overwhelming.

Instead, parents are now directed to FOP Friends, which can help them to cope and signpost them towards other support.

The charity works with education and health authorities, as well as schools themselves, to ensure the disease is understood and patients are not disadvantaged.

Helen and husband Chris founded the #FunFeet4FOP campaign to raise awareness of the disease, and organised the first FOP Family Respite Weekend with no cost to all the families involved.

Helen, whose son Oliver is now 14 and a pupil at Sale High School, said: "We started with coffee mornings, jumble sales and raffles.

"At no point did we think it'd be on the national stage."

It is for this work and much more Helen has been honoured with the BEM.

Responding to the award, she said: "It was unexpected. It was an absolute honour and a complete surprise."