Tuesday, July 31, 2012

MOEBIUS SYNDROME IN THE NEWS
Today, a recent, and very inspirational, story from the UK--look at how much money was raised to help young Moebius hero Phoebe Kenyon:
"A youngster with a rare condition inspired fundraising for a charity which helps children with brain injuries and life threatening illnesses.

Phoebe Kenyon, three, of Lostock Hall, near Preston, suffers from Moebius Syndrome, a rare neurological disorder which affects the cranial nerves and causes paralysis to the face.
Phoebe also has development delay and muscle problems which means she needs help learning life skills such as sitting, standing, walking, eating and communication.
Phoebe has been attending The Legacy Rainbow House, which helps children with disabilities, brain injuries and life limiting conditions, for just over a year and within a few months of starting there, she had learnt to crawl.
Phoebe’s family launched their appeal after a leap in demand for the charity’s specialist expertise meant it needed to raise additional funds to ensure it could sustain and develop its services to meet future need.
Each current visiting family to The Legacy Rainbow House was asked to raise £3,000 to help the charity’s fundraising team increase support in the communities where they are located.
However, Phoebe’s Appeal surpassed all expectations by raking in £13,500.
Phoebe’s mum Lyndsay Hornby said: “The services offered by The Legacy Rainbow House are just unique and exceptional.
“Rainbow House has been a lifeline to us as a family. The thought of Phoebe not having access to Rainbow House was a frightening one as I knew that her progress would be hampered without it.
“Not only have they helped Phoebe reach significant milestones, but they have also offered so much guidance and support to me over the past year.
“In particular, we would like to thank the members of the Preston South Rotary Club who kindly donated £1,500. In addition, local schools supported Phoebe’s Appeal with a generous donation including Lostock Hall Academy, where Phoebe’s sister Caitlin attends, and Lostock Hall Community Primary School who held a ‘Dress as Rainbows Day’ and raised a substantial amount. Phoebe is due to start in the reception class there in September.
“We also want to thank Ye Olde Original Withy Trees who raised over £1,200, Forbes Solicitors who showed massive support by holding a ‘dress down day’ throughout their North West offices and Playdor Nursery in Chorley who held a ‘dress as rainbows day.’
“Friends of the family, Lindsay Littlewood and Caroline Lund also organised a cocktail evening which raised £700 and Still Materials Handling Ltd held a charity football match and raised £675.
“We are overwhelmed by the generosity of people and are extremely grateful for their continued efforts and support.
“I want to thank everyone from the bottom of my heart who got involved in Phoebe’s appeal.”
Although Phoebe has reached her target, the family are continuing to raise funds to help other children at The Legacy Rainbow House, which is based in Mawdesley.
• To donate to Phoebe’s Appeal, visit www.justgiving.com/PhoebeKenyon"

“Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”
Reinhold Niebuhr (1892-1971)

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