Firewalk For Edie
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£285 Raised
28% of £1k goal
24 contributors
0 days left
Ended Feb 4, 2015
On the 11th October myself, Edie's daddy and a group of friends will be walking over 1200 degree hot coals in an attempt to raise money for Edie's Second Splinted  Lycra Suit. Secondskin Lycra Splinted Suits are individually made and need to be ... More ...

On the 11th October myself, Edie's daddy and a group of friends will be walking over 1200 degree hot coals in an attempt to raise money for Edie's Second Splinted  Lycra Suit.

Secondskin Lycra Splinted Suits are individually made and need to be replaced yearly to allow for growth. Edie has been an exception to this rule as she has made dramatic developments in eating. After being solely tube fed for 2 years and then drinking she has now in the past 3 months began eating three meals a day which is a massive achievment which could easily never have happened or taken many years. As a result she has had a very very quick growth spurt and is going to need a new suit sooner than we imagined.

Whilst wearing her suit her curvature of her spine is being supported well which will hopefully delay the need for surgery. It has also given her better body awareness due to her sensory processing disorder and within 1 month of wear she had learned to crawl. She continues to amaze us and her medical team on a regular basis and we are sure her lycra suit is helping her developmentally.

For those who do not know Edie she was born with a rare genetic disorder which has resulted in many challenges for her which include congenital heart disease for which she had openheart surgery at 9months of age with more to come, feeding difficulties, learning delays, hypermobile joints, low tone, significant curvature of the spine, reflux, sensory processing difficulties, poor vision, skull deformaties and much more. Despite all of the above you couldn't meet a more happy, easy going tollerant bundle of absolute joy if you tried.

The NHS could only offer Edie a hard brace for her curvature of her spine and whilst wearing this everything she had achieved physically was taken away and she could even sit unaided and it was so sad to see her so withdrawn so after lots of research I found the Second Skin otherwise known as the Life Changing Suit.

The cost of a annual suit is £2190 and we have been fundraising for this recently and together with a donation from a charity we have £1155.00 so far which is brilliant.

Everyone who is doing the Firewalk for Edie will have use of this account and sponsor forms for donations. 

Thankyou to everyone for your continuing support for Edie's future.

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