Family raising funds to help Maddison’s rare condition

March 21, 2011

Family raising funds to help Maddison’s rare condition

this is nottingham | March 21, 2011 | By Dominic Howell

A MOTHER from East Leake is planning a birthday fun day to raise money for her daughter who is defying all medical expectations.

When doctors diagnosed Maddison Sherwood with a very rare muscular disease, which attacks her ability to breathe, they said she would never sit up unaided – but she has.

They said she would never be able to breathe for more than a minute without the aid of a ventilator – but she’s now managed 30 minutes without its help.

“Doctors just can’t work it out,” said mum Lidia Sherwood, of St Mary’s Crescent.

“She’s doing so well and I’m so proud.”

Maddison was diagnosed with spinal muscular atrophy with respiratory distress (SMARD) when she was born and spent the first 11 months of her life in the Queen’s Medical Centre.

There have only been two other recorded cases of SMARD in England and just 60 worldwide.

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Pride of Somerset Youth Awards: Becka Abson

March 9, 2011

Pride of Somerset Youth Awards: Becka Abson

thisisthewestcountry.co.uk | March 9, 2011 | By Alex Cameron

THE deeds of 17-year-old Becka Abson, of Taunton, epitomise the word ‘friendship’ and earned her a Sandy Padgett Award at the Pride of Somerset Youth Awards.

She received her certificate from Ken Padgett, husband of Ch Supt Sandy Padgett, who was in charge of policing in Taunton at the time she died.

Becka has been a loyal friend to a girl called Jasmine for the last ten years – and it was Jasmine’s mum Tina who nominated her.

Jasmine has Spinal Muscular Atrophy and is a full-time wheelchair user who needs continuous support.

That support often comes from Becka, who thinks nothing of washing or dressing Jasmine or helping her take her medication.

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Cheeky Charlie Bolton less than £4,000 away from life changing wheelchair

March 9, 2011

Cheeky Charlie Bolton less than £4,000 away from life changing wheelchair

News Shopper | March 9, 2011 | By Michael Purton

THE parents of a 17-month-old disabled boy are less than £4,000 away from raising enough money to buy him a powered wheelchair.

Charlie Bolton, of Haydens Close, Orpington, has spinal muscular atrophy type two, and cannot crawl, kneel, stand, walk or sit up from a lying position.

His parents Aimee Spiers and Edward Bolton are trying to raise £18,000 to buy him an electric wheelchair, which is currently not available on the NHS.

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Stem cell study could aid motor neurone disease research

March 1, 2011

Stem cell study could aid motor neurone disease research

Physorg.com | March 1, 2011

Scientists have discovered a new way to generate human motor nerve cells in a development that will help research into motor neurone disease.

A team from the Universities of Edinburgh, Cambridge and Cardiff has created a range of motor neurons – nerves cells that send messages from the brain and spine to other parts of the body – from human embryonic stem cells in the laboratory.

It is the first time that researchers have been able to generate a variety of human motor neurons, which differ in their make-up and display properties depending on where they are located in the spinal cord.

The research, published in the journal Nature Communications, could help scientists better understand motor neurone disease. The process will enable scientists to create different types of motor neurons and study why some are more vulnerable to disease than others.

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Electric wheelchair appeal for 16-month-old disabled Orpington boy

February 10, 2011

Electric wheelchair appeal for 16-month-old disabled Orpington boy

News Shopper | February 10, 2011 | By Michael Purton

THE parents of a 16 month old disabled boy are appealing for donations for a powered wheelchair so he can move around independently.

Charlie Bolton from Orpington was diagnosed with spinal muscular atrophy type two at 12 months old, and the condition has left him unable to crawl, kneel, stand, walk or sit up from a lying position.

His parents Aimee Spiers and Edward Bolton want him to have an electric wheelchair, but have been told by the NHS one is not likely to be available until he is five years old.

So they have started a campaign to raise the £18,000 needed for the wheelchair, which they say will allow him to “interact and socialise with his peers and have some independence”.

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Actress hits out at battle for disabled

February 7, 2011

Actress hits out at battle for disabled

EveningTimes | February 7, 2011

River City star Eileen McCallum today spoke out about the battle faced by young people with a disability to achieve the life they deserve.

It comes as a new report found there were “shocking inequalities” in the jobs market and leisure industry.

People with a disabilities also face difficulties in using public transport – even though transport providers are legally required to make “reasonable adjustments” for disabled passengers.

The report was put together by campaign group Trailblazers Scotland, which is backed by charity the Muscular Dystrophy Campaign.
It found some 90% of people said they had been put at a disadvantage by the job application process, and half had never had a paid job.

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Family of disabled girl back mum’s condemnation of government

January 23, 2011

Family of disabled girl back mum’s condemnation of government

Sunday Sun | January 23, 2011 | By Helen Rae

THE family of a disabled girl have backed a mother who condemned Prime Minister David Cameron for failing families who need respite care.

Earlier this week, exhausted Riven Vincent said she may be forced to put her daughter, Holly, into full-time care after being denied additional support from social services and she called upon the Government to provide more funding to help those with disabled children.

The six-year-old has severe quadriplegic cerebral palsy and epilepsy and requires round-the-clock care.But her parents receive just six hours’ respite a week and, in a desperate plea posted on the parenting website Mumsnet, Ms Vincent announced she had asked social services to take Holly into care.

Parents Alison and Clint Law, of Wallsend, North Tyneside, know all too well the difficulties of looking after a disabled child 24 hours a day, seven days a week, and agreed with Ms Vincent the Government should do more.

Their wheelchair-bound daughter, Ellen, nine, has spinal muscular Atrophy Type II, meaning she has no control over her lower limbs, suffers from chest infections and requires a special diet.

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Matthew’s Memory Appeal launched by Butterwick House Children’s Hospice

January 22, 2011

Matthew’s Memory Appeal launched by Butterwick House Children’s Hospice

The Northern Echo | January 22, 2011 | By Dani Webb

A BRAVE couple, who lost their three-month-old baby to a rare muscular condition, are backing a fundraising campaign set up in his memory.

John and Tracey Chad, of Parkside, Darlington, said they were honoured to be asked by Butterwick House Children’s Hospice to put son Matthew’s name to an appeal to raise £25,000.

The money raised from Matthew’s Memory Appeal, which will be launched today, will fund a sick children’s nurse.

Matthew was diagnosed with spinal muscular atrophy, a neuromuscular condition causing weakness of the muscles, when he was 11-weeksold.

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Thank you for helping us to care for Nancie

January 15, 2011

Thank you for helping us to care for Nancie

Daily Gazette | January 15, 2011

THE family of a toddler diagnosed with a rare muscle disease have thanked the community for rallying around.
Nancie Seaber was born a healthy 7lbs 6.5oz at Colchester General Hospital in June 2009.

But early last year, her parents Philip and Gemma began to notice Nancie was struggling to sit up and crawl around their home in Talisman Walk, Tiptree.

Although friends and medical experts told them babies developed at different speeds, Gemma said her “mother’s instinct” told her something was wrong.

Eventually, she was referred to a neurologist in Addenbrookes Hospital, Cambridge, where Nancie was diagnosed with type 2 Spinal Muscular Atrophy, which affects one in 6,000 babies.

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Support Plea From Paralympics Hopeful

January 13, 2011

Support Plea From Paralympics Hopeful

Times & Star | January 13, 2011

A COCKERMOUTH teenager is appealing to the community for sponsorship to help him train for the Paralympics in 2012.

IN THE SWIM: Swimmer Grant Taylor, 16, is a member of Cockermouth Swimming Club and hopes to qualify for the Paralympics in 2012Grant Taylor, 16, of Derwent Mills, has been swimming for two years and is being coached by Cockermouth Swimming Club’s Sean Balmer.

Grant, a year 11 pupil at Cockermouth School, who was diagnosed with a rare condition – distal spinal muscular atrophy – when he was 10 years old, said he needs the funding to help pay for his travel costs and training equipment.

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