Thank you everybody. Our campaign is now over.
South Downs Marathon for Friends of Edie Browne
£2,310 raised
51% of £4.5k goal
67 contributors
0 days left
Ended Jul 14, 2014
Nick Sealy, Andy Taylor and I are running the South Downs Marathon on 21st June. It's a horribly hilly, trail run that seemed like a good idea six months ago, but less so now. Normaily we engage in daft acts of exercise as a means of over ...

Nick Sealy, Andy Taylor and I are running the South Downs Marathon on 21st June. It's a horribly hilly, trail run that seemed like a good idea six months ago, but less so now. Normaily we engage in daft acts of exercise as a means of over compensating for our hair loss, but this time we're raising money for an excellent cause. Any money raised will go directly towards helping Edie Browne, who many of you know. For those who don't, Edie is 30months old and has so far endured open heart surgery of which there will be more to come and being tube fed for 2 years as well as many other struggles, but despite everything she is a ray of sunshine and is always such a joyful smiling little girl whom touches the heart of everyone she meets.

 

She was born with a rare genetic condition and as a result has developmental delay, congenital heart disease, low muscle tone, hyper mobile joints, sensory processing difficulties and significant scoliosis/curvature of her spine and keloid scar difficulties which is when you produce too much scar tissue.

 

She is a very motivated, happy little girl and has achieved sitting independently at the age of 2 and is now eating and drinking with tube feed top ups.

 

Edie is coming to a stage in her life where she needs a specialist bed but the most suitable bed to meet all her needs is not funded by the NHS. So her family are trying to raise money for a specialist bed from a company called Safe Spaces and it costs a staggering £4,500.00. Edie needs a bed that is padded, so that she doesn't hurt herself when she topples and a bed that doesn't have bars because of risk of entrapment. Because of Edie's sensory loss she mouths everything so needs a bed made of safe materials.

The Safe Spaces bed also has a good range of tilt and hi and low settings which will help with medical care and future recovery periods from further heart and spinal surgeries in the coming years.

 

Thanks for taking the time to read this, any donation no matter how small will make a huge difference to Edie and her family.

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