Life-Saving Treatment For Bobby & MPS Children

Genistein Treatment
recipient
Bobby
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£20,386.04
raised out of £600,000.00 goal
3%
ends 25 Dec 2013

  • created by
    Bobbys Family

Genistein Treatment

Our son Bobby is 7 years old and was diagnosed with Sanfilippo in December 2008.

Bobby has always been a lively boy, loving football and his trampoline. He lives for his garden and will spend most of his days outside bouncing and causing mischief. Bobby also loves his quiz shows, his favourites being Countdown and Deal or No Deal! Bobby always has a gorgeous smile on his face regardless of what comes his way.

Sanfilippo is a heart-breaking condition that gradually breaks down children's physical and mental abilities, which means Bobby's development will slowly deteriorate until his body is unable to support itself and he will die in childhood. As you can imagine, it's an absolutely heart-breaking prospect for a parent.

However, there is hope. There is a treatment known to dramatically improve the lives of Sanfilippo sufferers but it's not yet available in the UK as it hasn't been clinically tested. We need to raise £600,000 to fund a clinical trial at Manchester Children's Hospital, so that Bobby and hundreds of children like him can receive this treatment that could save their lives.

There are 130 families in the UK who have children with Sanfilippo disease. We are getting together with the help of the MPS Society to create Gift Pages for our children to try to help raise the funds any way we can. We know it's an absolutely mad amount of money, but this treatment is known to work and is literally ready NOW, we just need the funding to test it.

We'd love it if you're able to help. We know there are a million charities out there who all really need help but if you can spare a few pounds, dollars, euros, yen anything that would be amazing and would make all the difference. Once the trial is carried out the treatment can be made available, at very little cost, for Bobby and other children with this disease all over the world.

Please pass this Gift Page link on to as many friends, family, colleagues, press, social media as you can. Anything you can do, from just posting this link to your Facebook wall, or shouting out on Twitter will help us. There are children like Bobby with Sanfilippo disease all over the world - with a little bit of help we just know we can get them the help they need!

Thank you, with love from Bobby's Family


  • Walter

    Walter Montgomery made a contribution   19 May 2016

    Walter has made a contribution
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  • Larry

    Larry Sawyer made a contribution   19 Jul 2013

    I hope this helps.
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  • Maria

    Maria Bassett made a contribution   23 Apr 2013

    Well done Wendy :) xx
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  • lorien

    lorien hill made a contribution   21 Apr 2013

    Love to Bobby and his family and good luck to Wendy xxx
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  • Melissa

    Melissa Davies made a contribution   20 Apr 2013

    Good luck Wendy and good luck to Bobby and his family xxx
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  • Hayley

    Hayley Wallace made a contribution   20 Apr 2013

    Well done Wendy Woo for doing something so amazing for such a special little man good luck for Sunday from H and The Wallies x
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  • Sarah

    Sarah Townley made a contribution   20 Apr 2013

    My daughter Katelyn went to Nursery with Bobby and really missed him when he went to his new school and often talks about him and how he used to call her name out whenever he saw her. I also work at Bedonwell and would look forward to seeing his smile and listening to him singing Take That songs. Good Luck to Wendy Warnes who is running the marathon tomorrow and Best Wishes to Bobby and his family love Sarah, Steve, Ellie, Libby and Katelyn Millen xxx
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  • martin

    martin wilson made a contribution   20 Apr 2013

    good luck Wendy hope it goes ok love the Wilsons x
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  • lorraine

    lorraine Cowin made a contribution   20 Apr 2013

    Good luck to Wendy Warnes tomorrow at the London Marathon love Lorraine C xx
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  • Mike

    Mike Cornuaud made a contribution   20 Apr 2013

    Good luck Wendy. Try to not to run too fast as your times are embarassing me enough already. Mike (Denny, Jamie & Emily) xx
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  • Paula

    Paula Neal made a contribution   19 Apr 2013

    Good luck Wendy and best wishes to Bobby and his family. Paula and Ruby x
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  • Claire

    Claire Bewsy made a contribution   19 Apr 2013

    Go Wendy go x
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  • Lisa

    Lisa Phillip made a contribution   18 Apr 2013

    With the very best of wishes. I pray you raise the amount needed. Bless dear Bobby. Lisa P
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  • Catherine

    Catherine Batt made a contribution   13 Apr 2013

    Good luck with the Marathon Wendy. You have been so focussed on your training and dedicated to raising money for Bobby - you are a star. We will all be cheering you on. Love Cath, Steve, Kieran and Hannah. xxxx
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  • Chris

    Chris Luckens made a contribution   10 Apr 2013

    Best wishes to all
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  • Jo

    Jo Newman made a contribution   09 Apr 2013

    Good Luck in the Marathon, Wendy. A great cause to be running for. xxxx
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  • Nichola

    Nichola Rochester posted a comment   09 Apr 2013

    Good luck to Bobby and his family and to Wendy Warnes who has chosen a great cause to run the London Marathon for x
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  • Suzanne

    Suzanne Harding made a contribution   09 Apr 2013

    Wishing you good luck for the marathon Wendy, love from Suzanne, Mark, Matthew and Thomas x
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  • Nichola

    Nichola Rochester made a contribution   09 Apr 2013

    Good luck Wendy. We will be thinking of you. A great cause too x
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  • Victoria

    Victoria Jerwood made a contribution   09 Apr 2013

    Good luck to Bobby and his family, I really hope you make it. I used to love to hear Bobby sing as he walked along the corridor! He also had a wickedly accurate dropkick - especially with the solid, wooden spheres - ouch! Glad to hear he still loves to bounce. Well done Wendy, you are a star - will be routing for you from the comfort of my settee ! x
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  • Angela

    Angela Slater made a contribution   04 Apr 2013

    Good Luck Wendy !!!... .love from Angela, Paul, Mathew, Beth & Lucy Slater xxxx
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  • Elizabeth

    Elizabeth Gill made a contribution   23 Mar 2013

    A massive, massive thank you to Ed Johnson and the team at Yahoo UK for raising a huge amount over Christmas through various fundraisers. All of this going towards the Genistein trials.
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  • tomas

    tomas gill made a contribution   23 Mar 2013

    A massive, massive thank you to Ed Johnson and the team at Yahoo UK in London, who raised an amazing £4,479.74 for the Genistein trials over the Christmas period.
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  • tomas

    tomas gill made a contribution   23 Mar 2013

    A massive, massive thank you to Ed Johnson and the team at Yahoo UK in London, who raised an amazing £4,479.74 for the Genistein trials over the Christmas period through various events :-)
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  • David

    David Kimmett made a contribution   07 Mar 2013

    Wishing Bobby the best! From a Millward Brown colleague
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  • Angela

    Angela Griffiths made a contribution   03 Mar 2013

    Bobby is such a lovely little boy and I feel privileged to have worked with ihim! I am so proud of my friend Wendy for running the marathon to raise funds. She is one of life's angels and has a heart of gold- her dedication to training is amazing! Good Luck to Bobby's family in raising the funds-keep positive and strong! Lotsa Love Angela Griffiths. xxxxx
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  • Terri

    Terri Pearson made a contribution   02 Mar 2013

    Good luck with all the running Wendy, love Terri and Izzy xxxx
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  • Clare

    Clare Athawes made a contribution   10 Feb 2013

    Sponsorship for Wendy- Well done with the marathon training Wendy, great cause and for a very special boy xx
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  • Glenn

    Glenn Cahill made a contribution   27 Jan 2013

    Really hoping others can give what they can to help raise the funds for this little mans condition... All the best mate.
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  • Davina

    Davina Perkins made a contribution   11 Jan 2013

    Donation from Goodman Masson. We wish you well. Tahnk you to Sarah McIlroy for her suggestion to support.
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  • VFM

    VFM Estates made a contribution   02 Jan 2013

    A big thank you to everyone who came and supported our New Years Eve party to raise much needed funds for Bobby and other MPS children. Mark & Steve
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  • VFM

    VFM Estates made a contribution   02 Jan 2013

    A big thank you to everyone who came and supported our New Years Eve party to raise much needed funds for Bobby and other MPS children. Mark & Steve
    Post a reply   
  • VFM

    VFM Estates made a contribution   02 Jan 2013

    A big thank you to everyone who came and supported our New Years Eve party to raise much needed funds for Bobby and other MPS children. Mark & Steve
    Post a reply   
  • VFM

    VFM Estates made a contribution   02 Jan 2013

    A big thank you to everyone who came and supported our New Years Eve party to raise much needed funds for Bobby and other MPS children. Mark & Steve
    Post a reply   
  • Elizabeth

    Elizabeth Gill made a contribution   02 Jan 2013

    Kind donation by Dean Hart & Stuart McGeorge after Stuart lost a bet :) received with thanks, Bobby's Mum & Dad x
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  • Elizabeth

    Elizabeth Gill made a contribution   02 Jan 2013

    Many Thanks to Charles Evans for kindly donating his leaving collection, received with thanks Bobby's Mum & Dad
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  • Elizabeth

    Elizabeth Gill made a contribution   02 Jan 2013

    Collection made by Natures Window, with thanks to Annette Drummond for organising, love Bobby's Mum & Dad x
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  • Elizabeth

    Elizabeth Gill made a contribution   02 Jan 2013

    Collection by Bobby's School Dinner Ladies, received with thanks, love Bobby's Mum & Dad x
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  • Maurits

    Maurits Dolmans made a contribution   28 Dec 2012

    We wish you well!
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  • Caragh

    Caragh Cook made a contribution   21 Dec 2012

    Hope you all have a lovely Christmas, Love, Matt and Caragh xxx
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Angela