Boy, 5, who woke up one day unable to speak is learning to talk again after being diagnosed with ultra-rare condition

  • Ross Griffiths was 16-months old when he stopped being able to talk
  • His family have spent 3 years teaching him how to communicate again
  • Doctors have now diagnosed him with part of a chromosome missing 

By KATE PICKLES FOR MAILONLINE

Published: | Updated:

Ross Griffiths, pictured with mother Becky Lane, was left unable to speak one morning

Ross Griffiths, pictured with mother Becky Lane, was left unable to speak one morning

A boy who went to bed one night and awoke the next day to find he couldn't speak has been diagnosed with a rare genetic condition.

Ross Griffiths was just 16 months old when his parents tucked him in for the night, only to discover he had lost his ability to communicate the following morning.

His family have spent the last three-and-a-half years helping him to learn how to talk again while not knowing what had caused his mystery ailment.

But now doctors have diagnosed him with a genetic condition called 15q11.2 - where a tiny piece of chromosome 15 is missing.

His parents Becky Lane and Craig Griffiths, from Redcar, said the first they knew of his illness was when he could only cry that morning.

'At 16 months old, he went to bed fine, said 'night night', went to sleep and when he woke up next morning, he couldn't talk,' said Miss Lane, 28.

'He always used to shout for mum and dad when he woke up, but that morning, he couldn't and he just cried and cried.

'He physically couldn't tell us anything - it was heartbreaking.

'He used to bang his head because he got so frustrated when he couldn't tell us what he wanted.' 

Ross has endured frequent visits to paediatricians and specialists and undergone lots of tests before doctors made the breakthrough two weeks ago.

As well as his communication problems, the youngster is prone to mood swings but is also very affectionate, caring and loving.

His speech is slowly starting to return and his recent diagnosis means he can start more targeted treatments.

On Saturday he plans to go and meet Santa and use sign language to tell him what he wants for Christmas

Inspired by the video of Middlesbrough's Cleveland Centre Santa signing with three-year-old Mali Williams Cody, Ross - who is usually too shy to use his sign language away from school or home - told his parents he wanted to sign with Santa too.

The youngster has been diagnosed with a rare genetic condition which caused his speech to go as a toddler

The youngster has been diagnosed with a rare genetic condition which caused his speech to go as a toddler

It is hoped  Ross will converse with Santa using the Makaton sign language skills he learned from teacher Maria McSorley and has been encouraged to use at his primary school.

He always used to shout for mum and dad when he woke up, but that morning, he couldn't and he just cried and cried.
Becky Lane, 28

'His speech has come on a lot but he's still very difficult to understand and is two years behind where he should be.

'For three years, it was like teaching a child how to speak again, and he only really started to form words in January this year.

'He was so scared to use his sign language outside the house, but when he saw the video of the girl signing with Santa, it showed him he didn't have to be embarrassed.

'And when I asked if he wanted to sign with Santa, he said 'yes' straight away. He can't wait.'

And in case Santa's reading this and wants a few clues about Ross' modest 

For more information about 15q11.2, visit support group website www.rarechromo.org 

Ross, pictured with parents Becky Lane and Craig Griffiths and brother, Nicholas, hopes he can meet Santa

Ross, pictured with parents Becky Lane and Craig Griffiths and brother, Nicholas, hopes he can meet Santa

WHAT EXACTLY IS THE CHROMOSOME DISORDER?

A 15q11.2 deletion is a very rare genetic variation in which there is a tiny piece of chromosome 15 missing.

Because only very small numbers of people have been identified, it is not certain what the full range of possible effects of the microdeletion are.

Additionally, the features vary, even between members of the same family. They do not affect everyone and in any individual they can be more or less obvious. 

The most common features are: 

  • Children may need support with learning. 
  • The amount of support needed by each child will vary, although most benefit from supportive services for special needs 
  • Behaviour and emotional disorders including attention deficit hyperactivity disorder and/or autism in some children 
  • Speech delay in some children 

There are many reasons for the speech delay, including the link between the ability to learn and the ability to speak.

People with the condition who are healthy should enjoy a normal lifespan. 

Source:  Understanding chromosome disorders

 

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