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£1,035raised of £400 target by 36 supporters

Weʼre raising £400 to Help Soft Bones UK fund equipment needed to help improve the quality of life of patients with Hypophosphatasia (HPP - Soft Bones)

Portsmouth, UK

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Story

Help us raise our goal £400 sponsorship.

This year over 100 people from Prudential Financial Planning are taking on the summer challenge of walking part of Hadrian's Wall, either 25km or for the more athletic, 42km.

We are Helen, Jude, Richard & Tina. Helen is talking the 42 km walk, and we others will join for the last 25km.

We have chosen Soft Bones UK as our home charity for this event, a charity set up by Tina's friend Meryl, after her son Maddox was diagnosed with HPP.

HPP is an ultra-rare genetic condition, which means that Maddox lacks an important enzyme to grow bones. Maddox was just a few weeks old when he was diagnosed with Hypophosphatasia (HPP).

After a normal pregnancy with no complications, Maddox was rushed back into the QA Hospital after only one night at home. X-rays showed that his bones were underdeveloped and moth-eaten and that he had broken his wrists and some ribs during birth. He had signs of rickets so his legs were curved, he was ‘floppy’ and even breathing and eating was an effort so he had to be put on breathing support and fed with a tube.

70% of children born with HPP die before they reach the age of five.

The outlook was bleak until they were informed about a drug being trialed at Birmingham Children’s Hospital. And that’s where they stayed for the next four months, whilst Maddox received three injections a week of this life-saving drug.

Maddox will have challenges throughout his life, there are physical feats that he will not be able to achieve, but he’s so clever and determined, getting up to most things that little boys do!

Meryl and her family set up Soft Bones UK in 2017, to bring together families affected by HPP, offering support and sharing information. They now fundraise to buy specialist equipment, recently receiving their first request for a specialist walker for a 22 month old in Manchester.

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Updates

7

  • Helen Boote, Richard Greenwood, Jude Skelly & Tina Curtis2 months ago
    Helen Boote, Richard Greenwood, Jude Skelly & Tina Curtis

    Helen Boote, Richard Greenwood, Jude Skelly & Tina Curtis

    2 months ago

    Our challenge! Blisteringly hot day, 42 km for Helen and 25km for Richard, Jude & Tina Thank you everyone for your support, we are blown away by your generosity.

    Update from the Page owner

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  • Helen Boote, Richard Greenwood, Jude Skelly & Tina Curtis2 months ago
    Helen Boote, Richard Greenwood, Jude Skelly & Tina Curtis

    Helen Boote, Richard Greenwood, Jude Skelly & Tina Curtis

    2 months ago

    Helen, mid walk

    Update from the Page owner

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  • Helen Boote, Richard Greenwood, Jude Skelly & Tina Curtis2 months ago
    Helen Boote, Richard Greenwood, Jude Skelly & Tina Curtis

    Helen Boote, Richard Greenwood, Jude Skelly & Tina Curtis

    2 months ago

    Richard Jude & Tina, mid walk

    Update from the Page owner

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2 months ago

Helen Boote, Richard Greenwood, Jude Skelly & Tina Curtis started crowdfunding

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Page last updated on: 7/9/2018 6:35 PM

Supporters

36

  • Janet & Mark Citrone

    Janet & Mark Citrone

    Jul 9, 2018

    Well done team, you did yourselves proud!m.

    £20.00

  • Helen Boote

    Helen Boote

    Jul 9, 2018

    Well done! From Shirley & John x

    £5.00

  • Tina Curtis

    Tina Curtis

    Jul 3, 2018

    Donations from friends & family - thank you all for your generosity:Dad, Paul, Roger, Coral & Brett, Fran & Sean, Steve, Dave, Wendy, Jonsey and Dave

    £135.00

  • Richard Greenwood

    Richard Greenwood

    Jul 2, 2018

    We did it :-) What could be better than a nice gentle stroll in the British Summertime??

    £50.00

  • The Faseys

    The Faseys

    Jun 30, 2018

    Well done Helen and team, an excellent effort!

    £30.00

  • Helen Boote

    Helen Boote

    Jun 29, 2018

    Well done everyone, what an exhausting day! A great experience and challenge in a fab place xx

    £30.00

  • Clive & Sue

    Clive & Sue

    Jun 29, 2018

    Well done Helen & team!!!

    £20.00

Helen Boote, Richard Greenwood, Jude Skelly & Tina Curtis

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About the fundraiser
Helen Boote, Richard Greenwood, Jude Skelly & Tina Curtis

Helen Boote, Richard Greenwood, Jude Skelly & Tina Curtis

Portsmouth, UK

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