Pedal-powered tribute

August 23, 2011

Pedal-powered tribute | August 20, 2011 | By Will Frampton

A WESTBURY couple are holding a fundraising day at Westbury Town Football Club in memory of their baby Maisie, who died last year.

Dad Jim Pickernell, 30, has played with the reserves for the club, where his father-in-law is chairman, for five years, and thought it would be the perfect venue for a children’s bike and trike challenge.

The couple, of Timor Road, are hoping to raise as much as possible for the Children’s Intensive Care Unit at Bristol Children’s Hospital, where Maisie was cared for.

Maisie died last May aged just nine weeks and four days, after suffering from spinal muscular atrophy, a genetic condition which is most severe in babies. The event, on September 4, will raise money through sponsorship as youngsters aim to complete five full laps of the pitch.

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Health check on babies improved

July 18, 2011

Health check on babies improved

Leicester Mercury | July 18, 2011

A mum whose baby daughter died from a rare genetic disorder has succeeded with her campaign to bring in a training programme for health visitors.

Lucy Wright’s daughter Georgia died from muscle condition spinal muscular atrophy (SMA), aged seven months, in August 2008.

Since then, her mum, of Melton, has worked with a charity to urge NHS trusts to bring in training for health visitors which would help them to identify the condition earlier.

Leicestershire Partnership NHS Trust, which is responsible for health visitors in the county, is believed to be the first organisation in the country to bring in the training.

Lucy, 30, said: “If the training had been in place when Georgia was born, her condition might have been diagnosed earlier and it would have given her more quality of life in the time we had with her.

“I am pleased my campaign for the extra training in Leicestershire and Rutland has been a success but my work continues.

“I would like to see it introduced in every primary care trust in the country.”

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Drugs trial hope for brave Ruby

July 10, 2011

Drugs trial hope for brave Ruby

Worcester News | July 9, 2011 | By Richard Vernalls

A BRAVE young girl battling a rare genetic condition has started a cutting-edge medical trial which could offer hope of a brighter future to thousands of sufferers around the world.

Five-year-old Ruby Crowther has had more hurdles than most youngsters of her age to overcome.

The bright little girl, who goes to Rushwick CE Primary School, Worcester, has a degenerative nerve condition called type-2 spinal muscular atrophy (SMA), which causes the nerves sending messages to her muscles to die off.

We previously reported how Ruby needs a specially adapted wheelchair because she cannot walk and has limited use of her arms.

However, doctors have put her on a new trial involving a new drug called Olesoxime which is supposed to regenerate the nerves damaged by her condition.

She is one of only a handful of UK patients on the year-long trial. There are regular medical checks at Birmingham’s Heartlands Hospital where precise measurements are taken, to guage progress.

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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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