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FamiliesHealthMust ReadAmazing Grace. The three year old with a condition so rare it doesn’t even have a name

Amazing Grace. The three year old with a condition so rare it doesn’t even have a name

A unique three year-old girl left more like a child of nine months with a condition so rare it has no name is finally learning how to communicate with her parents.

Grace Calvert is thought to be the only person in the UK with the condition where part of her chromosome 2 is missing.

Grace Calvert, 4, who is the only person in the UK to have a rare genetic disease. See MASONS story MNGIRL; 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.

Grace was born with a rare genetic condition which has left her unable to communicate

She is unable to talk, walk or stand unaided and needs constant care from her parents Lee and Michelle.

As as well missing some of the chromosome which is mainly responsible for development some of her genes within the chromosome are not developed properly.

Her parents claim doctors dismissed their initial concerns about her development and it was not until she was two that she was finally diagnosed with the condition.

They have no idea what the future holds for Grace as no research has been done on the genetic defect and do not know if she will ever be able to walk and talk.

But they are finally learning how to communicate with her after waiting 18 months for speech therapy with the NHS thanks to sign language lessons from a charity.

Michelle, 35, a receptionist from Gillingham, Kent, 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.

“Grace will be turning four soon and it’s really hard for us as parents not to be able to hear our little girl’s voice.”

“She also gets really frustrated, we have to second guess what she wants all the time.

“Even though she can’t speak we can tell she’s a real character, she’s very strong willed and I hope that’s what will see her though and make her walk.”

Genetic experts will be following Grace’s development in the hope of finding out more about her condition.

Lee and Michelle Calvert with their children Hannah, 8,  and Grace, 4, who is the only person in the UK to have a rare genetic disease. See MASONS story MNGIRL; 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.

Lee and Michelle with their children Hannah, 8, and Grace, 3

The couple, who also have another daughter Hannah, eight, are one of the first families to benefit from a funded Makaton course – a form of communication based on signs.

Salesman Lee, 42, is doing a sponsored bike ride to raise money for charity More Than Words which runs the course so it that it can train other Makaton teachers.

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.”

More Than Words was set up by Paul Hughes, 30 and his wife Hannah, also 30, from Hoo, Kent, as their three-year-old daughter Gracie suffers with an undiagnosed genetic disorder.

With NHS waiting lists so long, the charity funded a local Makaton workshop, costing £1,500.

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.

More Than Words hopes to offer the courses nationwide and they have already had interest from Manchester and Brighton.

Paul says schools up and down the country offer the courses to children in school, but they are not readily available to parents.

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