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Families wait for decision on Muscular Dystrophy drug

Families wait for decision on Muscular Dystrophy drug
Posted on 25 Apr 2016 by EnViva Paediatric

An influential committee was due to meet today to discuss whether or not to recommend approving the drug eteplirsen for people with Duchenne Muscular Dystrophy. Members of the Food and Drug Administration (FDA) will sit down to consider the safety


Six-year-old with Cerebral palsy completes 2.5km charity fun run in just 28 mins

Six-year-old with Cerebral palsy completes 2.5km charity fun run in just 28 mins
Posted on 19 Apr 2016 by EnViva Paediatric

A six-year-old boy who suffers from Cerebral palsy completed a 2.5km fun run in less than half an hour on Saturday, with hopes that the money raised will help to fund a life-changing operation. Friends and family members expected Jack


Youngster may not benefit from muscular dystrophy drug

Youngster may not benefit from muscular dystrophy drug
Posted on 18 Apr 2016 by EnViva Paediatric

A schoolboy living with a chronic muscle-wasting condition is facing uncertainty over whether he will get access to a newly-approved drug, even though he has been involved in trialling it. It was confirmed just a few days ago that NICE,


Family launch fundraising appeal for young sons with Cerebral Palsy

Family launch fundraising appeal for young sons with Cerebral Palsy
Posted on 12 Apr 2016 by EnViva Paediatric

A British family has launched an appeal for help to raise £100,000 for their two three-year-old twins, who suffer from Cerebral Palsy and are unable to walk. The twin boys, named William and Arthur Warner, were delivered at just 28


Youngster with cerebral palsy recognised for her charity work

Youngster with cerebral palsy recognised for her charity work
Posted on 11 Apr 2016 by EnViva Paediatric

A nine-year-old girl who defied suggestions she may never learn to walk is doing valuable work as the ambassador for a children’s charity. Mia Thorne, who has cerebral palsy, is an ambassador for the Caudwell Children’s charity. As part of


Computer allows young girl with rare Rett Syndrome to communicate using her eyes

Computer allows young girl with rare Rett Syndrome to communicate using her eyes
Posted on 5 Apr 2016 by EnViva Paediatric

Young Selena Campobello, three, suffers from ultra-rare Rett Syndrome – a condition known to deprive girls as young as 18-months of the ability to talk, or to control their muscles.


Family’s frustration over cerebral palsy treatment

Family’s frustration over cerebral palsy treatment
Posted on 4 Apr 2016 by EnViva Paediatric

A young boy whose cerebral palsy surgery was not available on the NHS has once again written to the Prime Minister. Ben Baddeley, aged 11, had to go private to have the life-changing procedure and his family have subsequently had


Campaign for childrens’ dolls with disabilities takes off online

Campaign for childrens’ dolls with disabilities takes off online
Posted on 29 Mar 2016 by EnViva Paediatric

Iconic and instantly-recognisable dolls are getting a new makeover to reflect disabilities following a popular hashtag on Twitter and Facebook. Mother and journalist Rebecca Atkinson set up the #ToyLikeMe hashtag on Twitter after noticing that none of her children’s toys


Advice to parents to look out for signs of strokes in children

Advice to parents to look out for signs of strokes in children
Posted on 22 Mar 2016 by EnViva Paediatric

A teenager who was one of hundreds of young people to suffer a stroke has urged parents to look out for the warning signs. It was like any other day when Jordan Grainger had his first stroke – the only


Report highlights frustrations for families with disabled children

Report highlights frustrations for families with disabled children
Posted on 21 Mar 2016 by EnViva Paediatric

A recent study suggested that children living with a range of disabilities are often disadvantaged because too many playgrounds and playgroups aren’t accessible.


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