Lucy’s sponsored head shave in daughter’s name

July 6, 2011

Lucy’s sponsored head shave in daughter’s name

Melton Times | June 30, 2011

A BEAUTY therapist has pledged to lose her treasured locks if she raises £1,000 for charity in her baby daughter’s memory.

Lucy Wright (30), of Southwell Close, Melton, is doing her sponsored head shave for the Jennifer Trust for Spinal Muscular Atrophy – the only UK-based charity that helps families cope with living with the disease.

Lucy lost her daughter, Georgia, to the terminal degenerative disorder three years ago.

Since then she has devoted her time and energy towards raising funds for the charity which has helped her family and others as well as raising awareness of the disease.

To date she has raised nearly £4,000 for the charity.

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Brighton mother takes health campaign to Prime Minister

June 24, 2011

Brighton mother takes health campaign to Prime Minister

The Argus | June 24, 2011 | By Siobhan Ryan

The mother of a little boy living with a rare illness has written to Prime Minister David Cameron to protest at proposals to close a children’s heart unit.

Susanna Nicholls says getting rid of the service would cut off a vital lifeline for her five-year-old son Daniel.

Daniel suffers from spinal muscular atrophy which has affected his muscles and left him unable to crawl, walk or even sit up unaided.

He needs a machine at night to help him breathe and has been in and out of hospital all his life.

Daniel, from Patcham, Brighton, has been treated by the specialist respiratory team at the Royal Brompton Hospital in London on many occasions and staff saved his life when one of his lungs partially collapsed.

Mrs Nicholls, 30, says that if the Royal Brompton’s heart unit closes, it will have a knock-on effect on other areas, such as the respiratory unit.

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The real lottery of IVF treatment

June 13, 2011

The real lottery of IVF treatment

Telegraph & Argus | June 13, 2011 | By Sallie Clifford

Leanne and Andrew Hardaker longed for a child of their own.

Both had children from previous relationships. Sadly, Leanne’s 11-month-old daughter, Chloe, died from the rare muscle-wasting disease spinal muscular atrophy.

Failure to conceive naturally led the couple down the IVF route, but because Andy already had children, they discovered they weren’t allowed free treatment on the NHS.

Determined, the Keighley couple sought treatment abroad, but when that failed they tried desperately to raise the money themselves.

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Birmingham youngster surprised with new wheelchair

May 31, 2011

Birmingham youngster surprised with new wheelchair

Birmingham Mail | May 30, 2011 | By Christina Savvas

A DISABLED youngster was stunned when she was given a new wheelchair by a volunteer she had gone to surprise with a thank you for his work.

Libby Smalley, who has the muscle-wasting condition spinal muscular atrophy, presented a gift to Alexander Patrick to mark the 25th anniversary of his grant-giving fund the Muscular Dystrophy Campaign’s welfare trust .

The 11-year-old, from Castle Vale, handed over a collage of thank-you letters from some of the thousands of children and adults helped by the fund.

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Our Heroes: Determined Tilly is a charity champion

May 23, 2011

Our Heroes: Determined Tilly is a charity champion | May 23, 2011 | By Alex Campbell

BRAVE Tilly Griffiths depends on a hi-tech wheelchair to perform the basic functions most children take for granted.

But lack of mobility has proved no barrier for the 11-year-old – she has now helped to raise £2 million for charities and good causes.

Tilly, of Cheddleton, suffers with spinal muscular atrophy, a muscle-wasting condition which causes progressive weakness and loss of movement.

Her fund-raising efforts have helped the family pay back – with interest – the charities which have supported them throughout.

This month Tilly joined John Caudwell, founder of the Caudwell Children charity, on stage at the organisation’s Butterfly Banquet.

Her poignant testimony about the value of her motorised wheelchair, bought for her by the charity, sparked a surge in donations which topped £500,000.

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Fund-raising event aimed to help pioneering research into illness

April 27, 2011

Fund-raising event aimed to help pioneering research into illness

The Star | April 27, 2011

A DOTING dad whose son has a muscle-wasting disease for which there is no effective treatment or cure is raising cash for pioneering research at a world class institute in Sheffield.

Mohammed Amin’s son Saeed was diagnosed with spinal muscular atrophy or SMA when he was two.

Tthe degenerative neurological condition prevents nerve cells in the spinal cord functioning properly, causing muscles to weaken and eventually stop working.

The prognosis for patients with the disease – similar to motor neurone disease in adults – is not good, with some given a life expectancy of only two years.

But 14-year-old Saeed has battled bravely through the condition – resorting to a wheelchair full-time only three years ago.

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Bristol mum raises £11,000 for charities in memory of her son

April 23, 2011

Bristol mum raises £11,000 for charities in memory of her son

Evening Post | April 23, 2011

A MUM raised £11,000 through a ball in memory of her son who died a year ago.

Mary Abrahams felt the star-themed ball would be the perfect way to mark a year since the death of 14-year-old Ryan.

And she managed to raise a total of £11,000, which was split between two charities that supported the family – the Jessie May Trust and Children’s Hospice South West.

The Bradley Stoke teenager was born with brittle bones and spinal muscular atrophy, but never let his disabilities get in the way of doing what he wanted to.

The former Evening Post Gold Star winner played wheelchair football for Aston Villa’s team and also played table-top cricket.

The ball at Ashton Court Mansion was held two days after the anniversary of Ryan’s death and his mother found organising the event helped occupy her during a difficult time.

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Eston writer’s second novel based on childhood

April 21, 2011

Eston writer’s second novel based on childhood

Evening Gazette | April 20, 2011 | By Dave Robson

AN AUTHOR has drawn on his own experiences of growing up in the 1970s to pen his second novel.

Children of the Resolution, by Eston writer Gary William Murning, explores, within the context of a unique coming-of-age story, the development of integrated education for children with disabilities.

And that’s something Gary knows plenty about for, having been born in Guisborough in 1966 with a form of spinal muscular atrophy, he spent some of his early years at schools for children with physical disabilities before going into mainstream education.

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Bark in the Park charity effort launched in aid of baby Matthew Chad

March 28, 2011

Bark in the Park charity effort launched in aid of baby Matthew Chad

Evening Gazette | March 28, 2011 | By Lindsey Mussett

FOUR-LEGGED friends are taking the lead in raising vital cash for a children’s hospice in memory of a tot who spent time there before he died.

Butterwick House Children’s Hospice, in Stockton, launched its brand-new Bark in the Park event – a sponsored walk with a difference – as part of the new Matthew’s Memory Appeal.

Pooches of all shapes and sizes will take a three-mile walk in memory of baby Matthew Chad, who was cared for at the hospice before he died at just three months old in September 2004, after being diagnosed with spinal muscular atrophy.

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Tributes to ‘absolutely remarkable girl’

March 28, 2011

Tributes to ‘absolutely remarkable girl’

Bournemouth Echo | March 27, 2011 | By James Morton

TRIBUTES have been paid to an inspirational teenager “who left a mark on everyone who came across her”.

The family of Natalie Keith, who died at home in Ensbury Park last week after a short illness, described the 14-year-old an “absolutely remarkable girl”.

Despite being born with spinal muscular atrophy, which left her wheelchair-bound throughout her life, Natalie was a typically bubbly, active teenager.

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