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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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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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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