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Rosy Rose raised £600 from 41 supporters

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Closed 01/10/2019

0%
£600
raised of £500 target by 41 supporters

    Weʼve raised £600 to help towards research for Polymicrogyria and Cystic Fibrosis, plus create more awareness into both conditions

    Reedham, Norwich, UK
    Funded on Tuesday, 1st October 2019

    Don't have time to donate right now?

    Story

    My dear friend Vicky lost her sister in law Emma to Cystic Fibrosis last year, at age 29, and even before she passed away, I vowed to understand more about the condition, and support this for others, as well as aid research to help sufferers.

    My and my husband Simon’s daughter Elizabeth (Libby) was last year diagnosed with a brain condition called Polymicrogyria after she was reaching milestones with significant delay, or not at all. Polymicrogyria literally means ‘too many small folds’, and they occur on the foetus brain during pregnancy. It can be genetic, or it can be caused by a virus, but little knowledge is known to pinpoint the reason.

    At 2 years old, Libby still cannot walk, talk, and has difficulty eating and swallowing, with very limited hand movements and low muscle tone in her trunk and tongue, plus many other additional needs. She has the potential for seizures, however unfortunately, due to the nature of the brain condition, and the fact that folds can occur anywhere on the brain, every case is usually different, so we are blind to her future and how she will progress.

    It is therefore a very rare condition, and I wish to support research into how it is caused, what help can be done, and ideally testing for it in pregnancy like one has for downs syndrome. Awareness of the condition will also support further diagnosis, and therefore further research and help towards aiding her additional needs.

    In aid of both of these causes, and with support from amazing friends Zoey and Frankie, we are all going to run the Norwich 5k Colour Run on 7th July 2018, which will be the first running for most of us in many years, if at all!

    Updates

    4

    • Rosy Rose6 years ago
      Rosy Rose

      Rosy Rose

      6 years ago

      Well I’ve finally recovered! Vicky, Zoey, Frankie and I all managed to complete the 5km, so proud of us all, as it was soooo hot!! Xx

      Update from the Page owner

      Share this update to help us raise more

    • Rosy Rose6 years ago
      Rosy Rose

      Rosy Rose

      6 years ago
      Update from the Page owner

      Absolutely over the moon that we’ve reached our target. Thank you to everyone who has donated. It is so very generous of all of you xxx

      Share this update to help us raise more

    • Rosy Rose6 years ago
      Rosy Rose

      Rosy Rose

      6 years ago
      Update from the Page owner

      Over 50% there! Amazing! Thank you all so much x

      Share this update to help us raise more

    6 years ago

    Rosy Rose started crowdfunding

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    Page last updated on: 7/10/2018 17.27

    Supporters

    41

    • Camilla Betts

      Camilla Betts

      Jul 10, 2018

      Great cause, well done xx

      £20.00

    • Steve Forde

      Steve Forde

      Jul 10, 2018

      Well done!

      £20.00

    • Samantha Morrow

      Samantha Morrow

      Jul 9, 2018

      Well done Rosy and friends on completing the run. Sam and Liam Xx

      £5.00

    • Mathew Robin

      Mathew Robin

      Jul 8, 2018

      Congratulations for completing the run to Rosie, Zoey, Frankie, and my wonderful big sister Vicky!

    • Michelle Gabriel

      Michelle Gabriel

      Jul 8, 2018

      Well done. Love the Gabriel's xx

      £10.00

    • Josiane. Walters

      Josiane. Walters

      Jul 8, 2018

      Well done Vicky this donation is from nanny x

      £10.00

    • Steph (Frankie's sister)

      Steph (Frankie's sister)

      Jul 8, 2018

      Congratulations for reaching your sponsorship target and for completing the run in the heat yesterday!

      £5.00

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    About the fundraiser
    Rosy Rose

    Rosy Rose

    Reedham, Norwich, UK

    It has been a very hard 12 months, with Vicky losing her sister in law Emma, and finding out that our 1 year old daughter Libby has a rare brain condition. We were already pregnant with our second child, and were and still are not sure whether he carries the same condition.

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