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Profile

Alison Jane

Cycling 100 miles for Ellouise and UNIQUE

Total raised so far £0.00

Target £0.00

Total plus Gift Aid: £0.00

Raised offline: £0.00

My story

[p]I will be Cycling 100 Miles for UNIQUE and dear little Ellouise. [/p][p][b][u]UPDATE 20th SEPT - VELO SOUTH EVENT CANCELLED DUE TO STORM ALI AND SECOND APPROACHING STORM - IMPACT OF STORM FLORENCE[/u][/b][/p][p][b][u]I HAVE NOW TRANSFERRED THIS CHALLENGE TO THE VELO BIRMINGHAM & MIDLANDS TAKING PLACE ON THE 12th MAY 2019.[/u][/b][/p][p][u]PLEASE[/u] read her 'story',[/p][p] [u]watch the very beautiful video[/u] [url=https://youtu.be/79gCNA9Wfgk]https://youtu.be/79gCNA9Wfgk[/url] [/p][p]and open your hearts (and wallets), now![/p][p][u]In her Mummy's words (Emma);[/u][/p][p]"Our world has been turned upside down in the past 2 months as our youngest child (of 3) Ellouise, has been diagnosed with an [b][u]extremely rare[/u][/b] chromosome condition. [/p][p][b]So rare[/b] in fact, that there are [b][u]only 9 registered cases in the world![/u][/b][/p][p]Our journey started with some worries about Ellouise's development. We were totally unprepared 4 months later to be told that our daughter has this very rare chromosome condition (3p26.3-25.3 deletion). A condition with known complications including heart defects, kidney and bowel issues, speech problems, sight and hearing issues, feeding problems, cognitive development and degeneration issues to name just a few![/p][p]Our only source of information and support has been the [u]charity Unique[/u], who have shared medical research and put us in touch with the other 8 families. Their support has been invaluable enabling us to reach out to others as we try to process this news and understand our millions of questions, hopes and fears and arm us with the critical information needed to push to get the relevant support and screening in place.[/p][p]We do not know what the future holds for Ellouise but with Unique's help we know we will fight for the support needed to enable Ellouise to thrive in her own unique way.[/p][p]Alison is our cycling mad Aunt, who is performing a wonderful act of love and kindness to help raise invaluable funds for Unique. To enable them to continue to support families and children like Ellouise face the uncertainties, lack of understanding and knowledge, and celebrate their achievements; as each and every chromosome child is amazingly Unique".[/p][p][url=https://youtu.be/79gCNA9Wfgk]https://youtu.be/79gCNA9Wfgk[/url][/p][p][u]In her Daddy's words (Jon);[/u]I can't say much more than has already be said so well by others but, Unique have been absolutely amazing in helping [url=https://www.facebook.com/emma.e.thompson.9?fref=mentions]Emma[/url] and I since we received Ellouise's chromosome mapping which revealed she is in the select group of people with a 3P25/26 deletion. Whilst there are a few handfuls of people with this, there are only 8 other (that we know of) worldwide who have a similar deletion to her. Sadly this means that the level of knowledge about what the effects on Ellouise's development and long term health is only slightly above guesswork.[/p][p]The insights and experience of the other families Unique have connected us to has defined and driven our dealings with medical professionals, or understanding of what can be possible and the support available to allow us to best help Ellouise become all she can be and more. Without Unique we would be lost in a black hole of worry and ignorance.[/p][p]Alongside that we have the most amazing families, friends and even people we've never met helping us along the way; I can't adequately express how much this means to us. [url=https://www.facebook.com/Alisonjfairley?fref=mentions]Alison[/url] has very kindly offered to destroy herself cycling to raise money for this tiny charity, and the reaction has been amazing!! Thank you to everyone who has already sponsored her, Emma and I are blown away by your kindness. I now kindly extend the request to those who may not have seen the original posts. Any help and support is greatly appreciated. Anything you can spare will help another family find a ray of light in the most heartbreaking and difficult days.[/p][p]Thank you.[/p][p]xx[/p][p][br][/p]
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Share Alison's story

Event

Personal Challenge Date

12 May 2019

Charity

Unique

Unique

Supporters

21-Sep-2018

Anonymous

£20.00 plus £5.00 Gift Aid

19-Sep-2018

Jane and Harry.

Ride safe Ali ! Be there wind , gales and rain I know your determination and how with every pedal stroke you will be thinking of the gorgeous Ellouise .

£30.00

17-Sep-2018

Greg J

£30.00

13-Sep-2018

Jane and Robert

Go girl!! XXXXXX

£50.00 plus £12.50 Gift Aid

10-Sep-2018

Anonymous

Good luck for the bike ride, it’s an amazing challenge to undertake! Love too to all the family and Ellouise from Faye, Ollie, Jessica and Lucy xx

£50.00 plus £12.50 Gift Aid

09-Sep-2018

Anonymous

£15.00

06-Sep-2018

Anonymous

04-Sep-2018

JJ and Anthony Massey

£30.00 plus £7.50 Gift Aid

04-Sep-2018

Anonymous

Love Alex, Gus and Elin x

£15.00 plus £3.75 Gift Aid

03-Sep-2018

Becky Jones

Good luck! Xx

£10.00 plus £2.50 Gift Aid