Grace Calvert was born with a rare genetic condition which means although she is nearly four years old, she is more like a nine-month-old baby.

She cannot stand unaided, walk or talk.

She is the only child in the UK with this condition where part of one of her chromosomes is missing. It is so rare, there is no name for it and no scientific research.

Genetic experts will be studying Grace as she grows, but could not tell her parents Lee and Michelle if she would ever walk or talk.

After waiting 18 months for speech therapy with the NHS, the couple discovered the organisation More Than Words, and were the first to benefit from a funded Makaton course – a form of communication based on signs.

Mr Calvert has now decided to tackle a sponsored cycle ride from Gillingham in Dorset to Medway’s Gillingham where the family live, in Featherby Road, to raise cash for the cause.

“Of course, we went through the stages of questioning ‘why us?’, ‘why our Grace?’ but then we picked ourselves up and started to look at what we could do to help her” - Mrs Calvert

He said: “After more than two years of knowing there was something wrong and wanting answers, to finally have Grace’s condition diagnosed was heart-wrenching, but almost a relief.

“Of course, we went through the stages of questioning ‘why us?’, ‘why our Grace?’ but then we picked ourselves up and started to look at what we could do to help her.”

While professionals in special schools like Grace’s Abbey Court know how to use Makaton, most parents do not – so cannot help with their child’s education.

Paul Hughes from Aveling Close, Hoo, also has a three-year-old daughter with a genetic disorder and together with wife Hannah decided to set up a charity to help others like them.

With NHS waiting lists so long, More Than Words funded a local Makaton workshop, costing £1,500.

But the aim is to train people to teach Makaton so it can be made available to everybody in contact with a child having communication difficulties, at a fraction of the cost.

Mrs Calvert said: “Not being able to communicate was very frustrating for Grace and us as a family.

“Learning to sign to Grace was amazing. Grace is already trying to replicate some of the signs back to us.

“Her sister Hannah has also been very keen to learn and to see Grace looking at her in awe as she signs to her is heartwarming.”

On May 30, to help raise funds to train Makaton teachers Mr Calvert with friends Mike Best and Ian Sutton, will be tackling the Gillingham to Gillingham bike ride. Support their challenge here.

Mrs and Mrs Hughes are close to gaining the £5,000 needed to make More Than Words officially registered as a charity.

Long term they are looking to hold sign and sing sessions, employ therapists and fund-raise for expensive equipment to help physically disabled children who cannot use signs to communicate.

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