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The boy who may never walk or talk

A one-year-old boy may never walk or talk after a rare medical condition triggered his brain to stop working.

Teddy Mansell, of Derbyshire, was just seven months old when he was diagnosed with Aicardi-Goutières syndrome.

The condition, thought to affect 400 people worldwide, stops the brain sending signals to the rest of the body, and causes the body to regress.

It has no cure and most sufferers aren’t expected to live past childhood because of their complexity of health issues.

Doctors told his parents that they have no idea if he will ever walk or talk. Teddy is unable to sit or crawl and has ‘no head control’. 

Teddy Mansell, of Derbyshire, was just seven months old when he was diagnosed with Aicardi-Goutières syndrome (pictured with his mother Kelly Mansell, 24)

Doctors told his parents that they have no idea if he will ever walk or talk. Teddy is unable to sit or crawl and has 'no head control' (Miss Mansell and Teddy's father Robert Smith, 26, is pictured holding a picture of their son)

Doctors told his parents that they have no idea if he will ever walk or talk. Teddy is unable to sit or crawl and has ‘no head control’ (Miss Mansell and Teddy’s father Robert Smith, 26, is pictured holding a picture of their son)

Teddy’s mother, Kelly Mansell, a pharmacy administer, described her pregnancy as being ‘perfect’. She said: ‘I gave birth just one day early. 

‘But at eight weeks, out of the blue, he slept for over 10 hours which was unlike Teddy. As first time parents we didn’t know if this was normal.’

Tests at hospital showed nothing wrong with Teddy, whose condition worsened when one weekend he was violently sick. 

Miss Mansell, 24, said: ‘He was choking, had movements like seizures and he was taken straight to hospital.

‘He underwent so many tests, and initially they didn’t tell us what they were testing for as the doctors didn’t want to worry us.’

Recalling the moment she was told Teddy had AGS, she said: ‘The diagnosis was so rare, it took a while before they were sure.

Teddy's mother, Kelly Mansell, a pharmacy administer, described her pregnancy as being 'perfect'. She said: 'I gave birth just one day early' (pictured with Mr Smith and Teddy)

Teddy’s mother, Kelly Mansell, a pharmacy administer, described her pregnancy as being ‘perfect’. She said: ‘I gave birth just one day early’ (pictured with Mr Smith and Teddy)

Tests at hospital showed nothing wrong with Teddy, whose condition worsened when one weekend he was violently sick (the couple are pictured with Teddy)

Tests at hospital showed nothing wrong with Teddy, whose condition worsened when one weekend he was violently sick (the couple are pictured with Teddy)

Recalling the moment she was told Teddy had AGS, she said: 'The diagnosis was so rare, it took a while before they were sure'

Recalling the moment she was told Teddy had AGS, she said: ‘The diagnosis was so rare, it took a while before they were sure’

‘You hear stories and see children but don’t ever think anything like this will happen to you.

‘But now we have a whole new aspect of parenting which is completely different to the norm.

‘However, we have embraced this and Teddy has taught us to not take things for granted and look at the bigger picture.’

Miss Mansell, from Swadlincote, added that Teddy is currently stable after a period of six months.

But she said: ‘We don’t know if Teddy will regress further down the line and lose the few skills he has.

‘However, currently we see so much determination in Teddy and feel with the right help he can progress and meet some milestones.’ 

Teddy’s father, Robert Smith, 26, a maintenance engineer, added: ‘He has no head control, can’t sit or crawl.

‘Because the disease is so rare, we don’t know what is next… When he was first diagnosed, we were in disbelief.  

Miss Mansell, from Swadlincote, added that Teddy is currently stable after a period of six months (pictured together)

Miss Mansell, from Swadlincote, added that Teddy is currently stable after a period of six months (pictured together)

Teddy’s father, Robert Smith, 26, a maintenance engineer, added: 'He has no head control, can’t sit or crawl' (the pair are pictured together)

Teddy’s father, Robert Smith, 26, a maintenance engineer, added: ‘He has no head control, can’t sit or crawl’ (the pair are pictured together)

With no medication or alternatives available, his parents are hoping to be able to fund and participate in a trial treatment in the US (pictured together)

With no medication or alternatives available, his parents are hoping to be able to fund and participate in a trial treatment in the US (pictured together)

Miss Mansell said: 'We hope in time he will be able to be a bit more independent - we have a lot of hope for him'

Miss Mansell said: ‘We hope in time he will be able to be a bit more independent – we have a lot of hope for him’

Teddy's parents hope to take him to The Children’s Hospital of Philadelphia, to allow researchers to examine him and see if they can offer drugs

Teddy’s parents hope to take him to The Children’s Hospital of Philadelphia, to allow researchers to examine him and see if they can offer drugs

‘The doctors said to us, “we can’t tell you if your son will ever walk or talk”. We never expected Teddy’s condition to be so serious.’ 

With no medication or alternatives available, his parents are hoping to be able to fund and participate in a trial treatment in the US.

They hope the treatment could stop his condition from becoming active, and damaging his brain further.

Mr Smith added: ‘We do not know if Teddy will suffer from further regression and want to help prevent this through the US trial.’

Miss Mansell said: ‘We hope in time he will be able to be a bit more independent – we have a lot of hope for him.

‘The trial in America is at a hospital [in Boston] where around 20 children go with Teddy’s condition, so we hope we can learn a bit more.

‘But the clinic, any treatment in America will cost significantly.

‘It’s clear to us that Teddy will always need treatment, and we’ll always do whatever is possible to give Teddy the best possible chance.’

She added: ‘Teddy has the most contagious smile and laugh, he is the most amazing little boy we are so grateful of each day we get to be his parents.

‘We are grateful we have a team at Derby Hospital that work hard to help Teddy but the treatment in Philadelphia will provide the specialist care he needs.

‘We are hoping to set up a UK charity for his condition in the future so families with children suffering from this can get the support they desperately need.’

Teddy’s parents hope to take him to The Children’s Hospital of Philadelphia, to allow researchers to examine him and see if they can offer drugs. 

The syndrome affects white matter and nerve pathways – the signals that are required to make purposeful movements of the body.

The immune system is constantly heightened, which in turn causes damage within the brain which leads to severe physical and mental impairment. 

Anyone wanting to donate can do so here. 

Read more at DailyMail.co.uk


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