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Capital Breakfast with Roman Kemp 6am - 10am
31 January 2018, 06:00
A little girl from North Tyneside with a life expectancy of between 5-10 years due to a rare brain condition has been given fresh hope.
Masie Barrass, who’s four and from Wallsend, was diagnosed with Alexander’s Disease two years ago.
The condition affects her brain, preventing her from being able to walk or talk – with doctors predicting her symptoms were likely to get worse.
However, Masie has defied the odds and could now have a chance of having her condition reversed through pioneering treatment in the US.
Val Johnson, Masie’s grandma, said the original diagnosis shocked her family:
“I knew how devastating the disease was, it was heart-breaking and you think ‘that’s it’ there and then.”
“It’s a life shortening brain disease and it’s very rare.”
“When Masie was diagnosed there were fifty infants in the world (diagnosed with the disease)”
“The prognosis was that she’d actually get worse.”
Val, along with Masie’s mum Kayleigh, is now in contact with the researchers at the Children’s Hospital of Philadelphia, where the medical trials are going to be taking place.
The trials so far have proven to reverse the condition in mice, and it’s hoped those results can be mirrored in humans.
The family now pray the four-year-old can be accepted onto the scheme - a place that could transform her life.
“A neighbour of ours heard about Masie and contacted us to tell us the Freemasons will donate money to us to help her get on this research programme – we were really overwhelmed with that.”
“You don’t sleep, you don’t function until you come to terms with it, so I think it would be absolutely amazing to get her in that research programme.”