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£600raised of £500 target by 41 supporters

Weʼre raising £500 to help towards research for Polymicrogyria and Cystic Fibrosis, plus create more awareness into both conditions

Reedham, Norwich, UK

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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!

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Updates

4

  • Rosy Rose1 month ago
    Rosy Rose

    Rosy Rose

    1 month 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 Rose1 month ago
    Rosy Rose

    Rosy Rose

    1 month 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 Rose4 months ago
    Rosy Rose

    Rosy Rose

    4 months ago
    Update from the Page owner

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

    Share this update to help us raise more

5 months ago

Rosy Rose started crowdfunding

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Page last updated on: 7/10/2018 5:27 PM

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

Rosy Rose

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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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