Spina Bifida UK
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Selection of useful sources relating to spina bifida
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"Miracle child" who was given days to live twice to celebrate 40th birthday (From Gazette Series)

"Miracle child" who was given days to live twice to celebrate 40th birthday (From Gazette Series) | Spina Bifida UK | Scoop.it
TWICE in the first year of their son's life the Drewetts were told by doctors the infant would not see another day.
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TWICE in the first year of their son's life the Drewetts were told by doctors the infant would not see another day.

 

But each time Andy, who was born with a hole in his spine which has left him paralysed from the waist down, survived against all odds puzzling medical experts.

 

Nearly four decades on, the "miracle child" from Thornbury is preparing to celebrate his 40th birthday.

 

"They said he would get an infection in his back and that he would perish. But now he's living alone independently and everybody who knows him is staggered. He is just an amazing person," said his father Lyall, 74.

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Seven-year-old Amy's teddy gets treatment in hospital too - ChronicleLive

Seven-year-old Amy's teddy gets treatment in hospital too - ChronicleLive | Spina Bifida UK | Scoop.it
ChronicleLive
Seven-year-old Amy's teddy gets treatment in hospital too
ChronicleLive
But for Amy, who loves to sing, dance, run and horseride, her condition of spina bifida isn't a barrier to anything.
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Protesters heckle minister during 'top secret' visit - The Bolton News

Protesters heckle minister during 'top secret' visit - The Bolton News | Spina Bifida UK | Scoop.it
Protesters heckle minister during 'top secret' visit The Bolton News Mr Hardman, who was born with spina bifida, lost his job at Remploy in Bolton last September after working there for 33 years said: “I'm here because I know what effect this is...
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Children's rights cited in legal challenge launched against 'bedroom tax' - The Guardian

Children's rights cited in legal challenge launched against 'bedroom tax' - The Guardian | Spina Bifida UK | Scoop.it
The Guardian
Children's rights cited in legal challenge launched against 'bedroom tax'
The Guardian
She sleeps on a hospital mattress to ease bed sores caused by her spina bifida, while he uses a single bed in their smaller second room.
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The cases lodged by disabled adults include one relating to Charlotte Carmichael and her husband Jayson. She sleeps on a hospital mattress to ease bed sores caused by her spina bifida, while he uses a single bed in their smaller second room. But from April the new regulations would mean that they are under-occupying their specially adapted flat in Southport, Merseyside.

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The children facing a lifetime of surgery - BBC News

The children facing a lifetime of surgery - BBC News | Spina Bifida UK | Scoop.it
BBC News
The children facing a lifetime of surgery
BBC News
Jack is back in hospital because he needs more space at the back of his skull, so that the cerebrospinal fluid that surrounds his brain can flow freely.
ShineUKCharity's insight:

"Among the parents that are likely to be making many trips to the hospital are Nicola and Stephen, who have been told that the baby boy they are expecting has spina bifida."


Find out more about Spina Bifida by visiting: http://www.shinecharity.org.uk/spinabifida

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Eight-year-old Maddie who has #SpinaBifida - completed GREAT SOUTH RUN 1.5km mini race 4 children! @portsmouthnews

Eight-year-old Maddie who has #SpinaBifida - completed GREAT SOUTH RUN 1.5km mini race 4 children! @portsmouthnews | Spina Bifida UK | Scoop.it
On the night before the Great South Run, Maddie Martin found it difficult to sleep.
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On the night before the Great South Run, Maddie Martin found it difficult to sleep. 

 

The eight-year-old was looking forward to taking part in the 1.5km mini race for children, but it wasn’t excitement that was keeping her awake.

 

The Leigh Park youngster has spina bifida which causes pain in her legs and it was the constant ache that stopped her sleeping.

 

But still the plucky schoolgirl was determined to complete the Portsmouth race and raise money for the support group that had helped her.

 

And Maddie’s bravery didn’t end there. The youngster needs a wheelchair to get around, but climbed out and walked the last 100 metres to the finish line.

 

http://www.portsmouth.co.uk/lifestyle/maddie-s-attitude-is-that-nothing-is-going-to-beat-her-1-4632699 ;

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UKIP candidate sparks outrage by 'calling for compulsory abortion of any ... - Daily Mail

UKIP candidate sparks outrage by 'calling for compulsory abortion of any ... - Daily Mail | Spina Bifida UK | Scoop.it
Daily MailUKIP candidate sparks outrage by 'calling for compulsory abortion of any ...Daily MailConsider compulsory abortion when the foetus is detected as having Downs, spina bifida or similar syndrome which, if it is born, will render the child a...
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Cute little Rosalie needs your help

Cute little Rosalie needs your help | Spina Bifida UK | Scoop.it

THIS cute little girl makes everyone’s heart melt but she now needs your help.

 

Twenty-month-old Rosalie Rice-Stephens can’t walk or crawl and yearns to play with her three-year-old brother, Samuel, and sisters, Gracie, aged six, and Antonia, aged five.

 

Rosalie has spina bifida, hydrocephalus, and talipes in both feet.

Surgeons are so impressed with her courage, they call her ‘the little smiler’ because she never cries.

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Pregnant women urged to take B12 - Nursing Times

Pregnant women urged to take B12 - Nursing Times | Spina Bifida UK | Scoop.it

Mothers-to-be should take vitamin B12 to prevent their children developing birth defects such as spina bifida, a charity has said.

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"The spine is made up of 33 bones or vertebrae. The vertebrae have two main functions..."

"The spine is made up of 33 bones or vertebrae. The vertebrae have two main functions..." | Spina Bifida UK | Scoop.it

The Spine

The spine is made up of 33 bones or vertebrae. The vertebrae have two main functions. One is to provide anchorage for muscles so that we can move as the brain dictates to those muscles. The other is to provide protection to the spinal cord.

The Neural Tube

The central nervous system and spine develops between the 14th and 23rd day after conception. Spina bifida occurs when the neural tube fails to close correctly. The vertebrae also fail to close in complete rings around the affected portion of the spinal cord. This leaves a gap posteriorly (at the back), involving one or more vertebrae. The fault may occur in one or more of the vertebrae but it is most common around waist-level.

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Maya's Adventures in Wonderland - "Great Blog Worth Checking Out!"

Maya's Adventures in Wonderland - "Great Blog Worth Checking Out!" | Spina Bifida UK | Scoop.it

Maya was born on the 12th October 2012 and has Spina Bifida, Hydrocephalus and Arnold Chiari II Malformation of the Cerebrum.

 

Now, we are about to celebrate her 1st Birthday next month and she has accomplished so much we can only have dreamed she would have achieved.

 

She faces many challenges ahead but we aim to succeed with the love, help and support from our fantastic family and friends.

 

http://mayaswonderland.weebly.com/ ;

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USEFUL Info relating to having a stoma or ostomy............. #SpinaBifida

USEFUL Info relating to having a stoma or ostomy............. #SpinaBifida | Spina Bifida UK | Scoop.it

“Stoma” simply means opening. A stoma allows access to the bowel or bladder via an opening on to the abdomen.

 

The contents of the bladder (wee) or bowel (poo) then empty into a special bag that sticks on to the abdomen (tummy), and fits around the stoma. This is emptied or changed regularly as necessary.

 

A stoma is one way of managing continence, but usually other methods would be tried first. Stomas may be temporary or permanent.

 

FIND OUT MORE: http://www.shinecharity.org.uk/spinabifida/information-publications/colostomy-ileostomy-urostomy-and-vesicostomy ;

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Kingston Park man with spina bifida tests out ParaGolfer....!

Kingston Park man with spina bifida tests out ParaGolfer....! | Spina Bifida UK | Scoop.it

STEVE Wilkinson, who has spina bifida and has spent most of his 54 years in a wheelchair, has played golf for the first time.

A modern-day miracle was made possible when the Ramside Hall club in Durham City hosted a sneak preview of ParaGolfer, an electrically-powered sports chair which can lift anybody from a sitting to a standing position.

 

The chair has already been used for fishing and shooting but the only sport Wilkinson had played before was bowls – with the aid of an adapted walking stick.

 

He said: “I really enjoyed myself. Hitting a golf ball was therapeutic – I have always wanted to play and I can see now why so many people are hooked on the sport."

 

Read More http://www.journallive.co.uk/newcastle-sports/golf-news/2012/09/20/steve-happy-to-be-in-the-driving-seat-61634-31870738/#ixzz26zzzqoWw

 

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Disgust at theft from stillborn daughter's grave - Get Surrey

Disgust at theft from stillborn daughter's grave - Get Surrey | Spina Bifida UK | Scoop.it
Disgust at theft from stillborn daughter's grave
Get Surrey
Mrs Hull, who has spina bifida occulta, said due to her disability she can only visit her daughter's grave when the ground is firm enough to walk.
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'We are so grateful for all the support': Wolstanton couple praise reaction of ... - This is Staffordshire

'We are so grateful for all the support': Wolstanton couple praise reaction of ... - This is Staffordshire | Spina Bifida UK | Scoop.it
This is Staffordshire
'We are so grateful for all the support': Wolstanton couple praise reaction of ...
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What you can do, not what you can't - Isle of Wight County Press

What you can do, not what you can't - Isle of Wight County Press | Spina Bifida UK | Scoop.it
Isle of Wight County Press What you can do, not what you can't Isle of Wight County Press It was started in 2008 by Steve Wilkinson, from Newcastle, to commemorate the birthday of his mother, Joyce, who had done so much for him as he faced life in...
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Charity single launched on Cumbrian miracle boy's first birthday - in-cumbria

Charity single launched on Cumbrian miracle boy's first birthday - in-cumbria | Spina Bifida UK | Scoop.it
in-cumbria
Charity single launched on Cumbrian miracle boy's first birthday
in-cumbria
The youngster, from Abbeytown, was not even expected to survive his own birth after doctors diagnosed him with spina bifida and hydrocephalus in the womb.
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Teacher, former councillor + disabled rights campaigner, Mr Flitcroft, who has spina bifida, responds 2 UKIP scandal! @Eveningmail

Teacher, former councillor + disabled rights campaigner, Mr Flitcroft, who has spina bifida, responds 2 UKIP scandal! @Eveningmail | Spina Bifida UK | Scoop.it
ShineUKCharity's insight:

A DISABLED rights campaigner has called on the public to reject “horrifying” views on taking the right to life away from babies who could be born with debilitating conditions.


CALLING FOR DIVERSITY: Ollie Flitcroft wants to dispel any belief that people with disabilities are a “burden” on the state REF: 50019107B000
Ollie Flitcroft hit out after a national scandal erupted surrounding UKIP member, Geoffrey Clarke, who was hoping to win a seat on Kent County Council. It came after Mr Clarke’s website was found to call for the government to consider compulsory abortion of all unborn babies with Down’s syndrome, spina bifida or “similar conditions”.

 

Mr Flitcroft, a teacher and former councillor who was also an athlete in his younger years, has spina bifida, and is paralysed from the waist down.

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Abortion row ex-UKIP man defeated

Abortion row ex-UKIP man defeated | Spina Bifida UK | Scoop.it
A by-election candidate suspended by UKIP after a row over compulsory abortion is beaten by the Tories.
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A by-election candidate suspended by UKIP after a row over compulsory abortion has been beaten by the Tories.

 

Geoffrey Clark came second in elections held on Thursday for Gravesham Borough Council and Kent County Council (KCC).

 

Mr Clark called for an NHS review to look at compulsory abortion of foetuses with Down's syndrome or spina bifida.

 

The ballot papers still listed him as a UKIP candidate, but the party said on Tuesday that if elected he would not serve as a UKIP councillor.

 

READ Shine's RESPONSE here: http://www.shinecharity.org.uk/media-centre/news/2012/12/19/shine-responds-to-forced-abortion-issue

 

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Special assembly 2 thank donors who helped change brave Cody's life #Myelomeningocele @sloughobserver

Special assembly 2 thank donors who helped change brave Cody's life #Myelomeningocele @sloughobserver | Spina Bifida UK | Scoop.it

A SPECIAL assembly will be held to thank donors who helped raise £10,000 to change a brave boy's life.

 

Cody Kelly, who was born with Myelomeningocele - a rare and severe form of spina bifida, will be presented with a specialist wheelchair at Foxborough School, in Common Road, Langley, at 9.30am on Tuesday.

 

The appeal, launched in August, which reached the halfway mark in weeks, was given a final boost by Paul Williams, of the Windsor-based Paul's Trust, who donated £5,000 after reading Cody's story in The Observer.

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Man with spina Bifida tells MEPs that fellow sufferers are “struggling to feed themselves” - YOUR THOUGHTS plz?

Man with spina Bifida tells MEPs that fellow sufferers are “struggling to feed themselves” - YOUR THOUGHTS plz? | Spina Bifida UK | Scoop.it

A Donegal man living with Spina Bifida told MEPs at the European Parliament this week that fellow sufferers are “struggling to feed themselves” and are increasingly isolated by cutbacks to essential services.

 

Frank Larkin (41), the Vice-President of the Donegal Branch of Spina Bifida and Hydrocephalus, travelled to Brussels to present a paper on the challenges of growing older with the condition.

 

Speaking on the occasion of World Spina Bifida Day, he highlighted the effects of the dire lack of services and the cuts to personal assistant hours on people who “just want to live normal lives”.

 

“Public transport is one very small example. I have a free bus pass, but how do I get on the bus? If I wanted to go from Donegal to Dublin, even if I gave Bus Eireann a week’s notice, they won’t provide me with that service,” said Mr Larkin. He said one MEP he had spoken to thought people with Spina Bifida died in their 30s.

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Little Noah Wall continues to defy doctor’s expectations.

Little Noah Wall continues to defy doctor’s expectations. | Spina Bifida UK | Scoop.it

he seven-month-old boy has spina bifida and hydrocephalus but despite his problems he continues to make progress on a daily basis.

Noah’s mum, Michelle Wall, 41, is backing a new campaign launched to raise funds for disabled children to help raise awareness of his condition and others like him.

Noah is one of the faces of Cash for Kids new campaign – the Helping Hand Appeal.

Mrs Wall, 41, said: “We want to raise awareness of spina bifida and of the importance for women of taking folic acid.

“Spina bifida sets in on the 14th day of conception – some women don’t even know if they are pregnant at that point and it’s pretty scary that it sets in that early.

“If we can make people aware of the importance of taking folic acid then that’s a good thing.”

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Levi Taylor who has spina bifida WINS "Child of Courage Award" @alnwickgazette

Levi Taylor who has spina bifida WINS "Child of Courage Award" @alnwickgazette | Spina Bifida UK | Scoop.it

UNSUNG heroes who do amazing things have been honoured for their bravery, courage, determination and strength in the Pride of Northumberland Awards 2012.

 

And CONGRATULATIONS goes to Levi Taylor,who was born with spina bifida and now aged 11, has won a Child of Courage Award!!!!

 

GREAT Video - WATCH: http://www.northumberlandgazette.co.uk/news/local-news/honours-go-out-to-unsung-hereos-at-pride-of-northumberland-awards-video-1-4927307 ;

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Oran Murphy (Newtownabbey) who has spina bifida, was "shaking" when he meet his idol - @LadyGaga

Oran Murphy (Newtownabbey) who has spina bifida, was "shaking" when he meet his idol - @LadyGaga | Spina Bifida UK | Scoop.it

Oran Murphy, from Newtownabbey, County Antrim, who has spina bifida, is a huge Lady Gaga fan.

 

The six year old has a specially adapted wheelchair which has a picture of Lady Gaga and the Born This Way logo on the wheels.

 

Lady Gaga was performing in Dublin as part of her Born This Way Ball world tour.

Oran said he was "shaking" when he got to meet his idol.

 

READ: http://www.bbc.co.uk/news/uk-northern-ireland-19672523 ;

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Education Act 1996 Section 312(2) provides legal definition of learning difficulty........!

Education Act 1996 Section 312(2) provides legal definition of learning difficulty........! | Spina Bifida UK | Scoop.it

The Education Act 1996 Section 312(2) as amended by the SEN and Disability Act 2001 provides the legal definition of learning difficulty. A child has a “learning difficulty” if:

 

(a) he has a significantly greater difficulty in learning than the majority of children his age,

(b) he has a disability which either prevents or hinders him from making use of educational facilities of a kind generally provided for children of his age in schools within the area of the local authority, or

(c) he is under the age of five and is, or would be, if special educational provision were not made for him, likely to fall within paragraph (a) or (b) when of or over that age.

 

http://www.shinecharity.org.uk/spinabifida/information-publications/supporting-children-with-special-educational-needs-in-school ;

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