44%
£11,137raised of £25,000 target by 371 supporters

Weʼre raising £25,000 to Help Pippa Fight EB

Location
Newport, United Kingdom
Time left
28 days to go

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Story

Please Help Pippa fight EB #pleasehelppippa

Our beautiful baby girl, Pippa Nancy Atkinson arrived on 24th July 2016. One year on, we are overwhelmed by the strength and tenacity of one little girl fighting a truly horrible skin condition that you’ve most likely never heard of.

When she was born, Pippa was missing 90% of the skin on her hands and feet. My husband Damian and I were told that she had an incurable disease, Epidermolysis Bullosa (EB).

We are asking for your help to raise funds for life changing medical equipment. Pippa is amazing; she fights EB every day and will continue to do so for the rest of her life. Please help Pip with her daily battle.

About Pippa’s condition

We, like so many others, we had never heard of this condition before. Epidermolysis Bullosa is listed in the top 10 most painful conditions on earth. It’s a random genetic fault that affects every aspect of every day. EB is a group of genetic skin conditions that cause the skin to blister and tear at the slightest touch.

Those born with EB have skin so fragile they are called 'butterfly children' – their skin is quite simply as fragile as the wing of a butterfly.

Beginning life as a Butterfly Child

Pip spent the first 23 days of her life in the Special Care Baby Unit (SCBU). We thought that the beginning of Pippa’s life would be spent at home in South Wales with her brother, her close relatives, and us. Instead, she was kept under close observation at Great Ormond Street hospital, whilst we learnt to lance her blisters, dress her wounds and handle her without causing further damage to skin.

When she came home we were unable to hold or cuddle her. We could only handle her with oils on our hands to prevent friction and she spent most of her time on a pillow.

One year on

Every day we face new obstacles. For months she could only wear her clothes inside out, as the seams caused her to blister. Now, her clothes have to be flat seamed specialist made or adapted so that the fabric doesn’t break her delicate skin.

Pippa undergoes daily full dressing changes which last up to two hours where her blisters are lanced, dead skin and scabs softened to gently remove without damaging the new skin underneath. Any kind of friction can cause new blisters to form, blisters must be lanced to prevent them splitting. Open wounds must be dressed with specialist non-stick dressings.

Throughout the day any large blisters that form need to be lanced. Pippa gets 50/60 blisters a day all over her body and inside her mouth. She has to have nappies lined to stop them rubbing and numerous different creams applied in an attempt to reduce friction. As she grows, and develops the urges to crawl and walk, her hands, knees and feet constantly have to be bandage

To cope with the pain Pippa takes daily morphine, 6 hourly Paracetamol and on bad days sedatives.

Hope

There is no known cure for EB. However, American doctors have identified hydrotherapy as an effective treatment.

Microsilk is a specialist bath available in the US. It injects micro air bubbles into the water, which gently exfoliate the skin to remove dead skin and scabs, breaking the EB blister scab cycle.

This is the only form of treatment available for EB, and will be vitally important to Pippa as she grows and learns to manage her condition independently. Unfortunately, neither the NHS, nor the council are able fund the cost of Microsilk.

We are looking to build a one-bedroom extension with specialist bathing and changing facilities for Pippa. This will enable her to have a private area to complete her daily dressing changes set up specifically to her needs, reducing stress and allowing her a relaxing space to soothe her skin.

The building costs for a one bedroom extension with bathroom will cost £17000, the bath £5000 and we've budgeted £3000 for decorating and maintenance.

Thank you

We appreciate you taking the time to read Pippa’s story. Your support is hugely appreciated.

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Updates

6

  • Hannah Prigg1 month ago
    Hannah Prigg

    Hannah Prigg

    1 month ago

    A massive thank you to everyone who has been fundraising and to everyone who has donated so far. We're overwhelmed by the generosity shown by people in the community and right across the country. We've raised over £10,000 and we're on track to get Pippa the life changing equipment she needs. Recently we achieved charitable status working with the Tree of Hope. On December 1st we're transitioning to another page to reflect the charity, but our target remains the same. The new page is here: https://www.justgiving.com/fundraising/pleasehelppippa

    Share this update to help us raise more

  • Hannah Prigg2 months ago
    Hannah Prigg

    Hannah Prigg

    2 months ago
    Update from the Page owner

    Share this update to help us raise more

  • Hannah Prigg3 months ago
    Hannah Prigg

    Hannah Prigg

    3 months ago

    A MASSIVE thank you to everyone's donated so far. We're so close to reaching £5,000!! Updates on fundraisers coming very soon.

    Share this update to help us raise more

3 months ago

Hannah Prigg started crowdfunding

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Supporters

371

  • Anonymous

    Anonymous

    Nov 27, 2017

    Donated in loving memory of Joe, partner to Jacky and Dad to Kim and Sharon x

    £110.00

  • Paul Bidder

    Paul Bidder

    Nov 25, 2017

    £10.00

  • Sharon O'Connor

    Sharon O'Connor

    Nov 24, 2017

    Hi Hannah, My dad (Joe O’Connor) sadly passed away in Oct-he read about Pippa & was very touched by her story.We held 2 collections and raised £168-Here is the 1st part-2nd coming from his partner

    £78.00

  • Martin, Nicola & Alistair Bishop

    Martin, Nicola & Alistair Bishop

    Nov 19, 2017

    I wish we could do more to help. I hope you reach your target. Wishing you all the very best for the future from our family to yours. xx

    £25.00

  • Anne Mogford

    Anne Mogford

    Nov 10, 2017

    Money raised by Urology Dept., Royal Gwent Hospital from a spooktacular Halloween Cake sale hope it helps Pippa's Cause

    £272.00

  • Anonymous

    Anonymous

    Nov 6, 2017

    Hope you reach your target.C&S

    £100.00

  • Face Painting by Laura

    Face Painting by Laura

    Nov 6, 2017

    I was so honoured to be asked along to the Fun Day yesterday to Face Paint. It was a very well organised afternoon raising much needed funds for this gorgeous little one! Well done Xx

    £44.00

About the fundraiser
Hannah Prigg

Hannah Prigg

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Newport, United Kingdom

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