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Elizabeth Elmer avatar
Elizabeth Elmer

Team Keira's London to Brighton page

We are cycling London to Brighton for The Lily Foundation because Keira has been diagnosed with Alpers Syndrome

131 %
£13,103
raised of £10,000 target
by 445 supporters
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  • Team members: Please see below in Our Story for Names.
  • Event: London to Brighton, 11 Sep 2016

The Lily Foundation

We fund research & raise awareness to support the families affected by Mito

Charity Registration No. 1122071

Story

Keira has been diagnosed with Alpers-Huttenlocher Syndrome on 1st June 2015 at just 4 years old.

Alpers-Huttenlocher syndrome is one of the most severe of a group of conditions called the POLG-related disorders.

This Mitochondrial Disease is extremely rare. The prevalence effects approx 1 in 100,000.

People with Alpers-Huttenlocher syndrome can survive from a few months to more than 10 years after the condition first appears.

There is currently NO cure.

The Lily Foundation is committed to finding a cure for Mitochondrial Disease through funding research, raising awareness and family support.

Keira sadly passed away 4th July 2016. She was at Naomi House with Lee and I by her side. She took her last breath, closed her eyes and peacefully went to sleep. She will be extremely missed however she was a brave little lady right from the start. We can't thank her Dr's and Naomi House enough for all their kindness in our journey over the past 2 years. Sleep well our little angel 

Please donate anything you can either via the JustGiving Page www.justgiving.com/KeiraElmer – or Text KEIR61 £1, £2, £3 etc to 70070.

Participants

London to Brighton 11th Sept - Elizabeth Whitman, Martin Whitman, Karla Batsford, Shona Adcock, Craig Pullinger, Neil Martin, Jamie Mills, Tom Woods, Ben Ions, Chloe Ross, Paul Roast, Matthew Baldwin, Anthony Young, Nat Tejevo, Kelly Walsh, Chris Healey, Niki Ions, Steve Durrant, Sarah Lamb, Tim Williams, Graham Rutt, Tim Goslin, Charlene Quelch, Chris Williams, Ken De Carlo, Kath Baron, Janice Westbrook, Georgie Greenland, Paul Greenwood, Alice Vincent, Keith Whitman, Mans Paul, Neil Chapple, Paul Boseley, Gary Bridgeman, Rob Silvester, Anousjka Selders & Mark Weston

Head Shaved 4th June - Vanda Williams

Pretty Muddy 18th June - Helen Michael

We are very grateful to you for taking your time to read our story and any donations made to this charity would be greatly appreciated.
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