Through a local fundraising campaign in 2019, CJ Lawnscaping became aware of a former local resident Livvy Woodburn (formerly Simms) who tragically is affected by a rare genetic condition called 'Ehlers Danlos Syndrome' (EDS) which causes the collagen in the body to be faulty and makes it's stability become very fragile. Liv's health deteriorated from being an active young woman to eventually becoming bed ridden and requiring ongoing life saving surgery. In Liv's case, the EDS caused her cervical spine to become unstable and it was crushing her brain stem when she moved, a condition called cranial cervical instability (CCI). The specialist surgery to correct this is not available on the NHS and only offered in Spain and the United States.

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The response in raising the required £100k for Liv's operation in Spain was amazing! She is now recovering and recuperating from her operation but will require intensive rehabilitation and possible further surgery in the future. Although she is currently living in the North East, her parents still live in the locality.

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Through our support, I am in regular communication with Liv and her parents and I have learned more about her personal battle and the charity in the UK that supports people with this rare condition - Ehlers Danlos Support UK. Specialist care is limited currently in the UK and significant funds have to be raised both for the surgery required and the associated travel and care costs which are required.

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Through CJ Lawnscaping, I have tried to support the cause of people with these rare conditions via our social media and particularly through my Facebook page .

 

 

In order to take that support a little further, after consultation with Liv and her parents, I have offered to assist with further fundraising and publicity for the EDS UK Charity

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This is only possible with the ongoing fantastic support of CJ Lawnscaping's loyal and local client base.

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Collection containers are carried with us when undergoing treatments, but attached below are links for further information or to make a donation.

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Thank you for your continued support.

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The Ehlers-Danlos Support UK – Support for people touched by the Ehlers-Danlos syndromes (ehlers-danlos.org)

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Donate – The Ehlers-Danlos Support UK (ehlers-danlos.org)

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