Gift Page For Tillie Mae & MPS children

Genistein Treatment
recipient
Tillie
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£9,797.00
raised out of £600,000.00 goal
1%
ends 25 Dec 2013

  • created by
    Tillie Mae

Genistein Treatment

Hello my name is Tillie Mae I was born on 8th December 2007. I am now 4 years old.

I have a big sister called Lexie she is 6 years old, she is my best friend and she looks after me, we love playing together. I like to go swimming and bouncing on my trampoline, I bounce really high. I also love to ride my pony Albert. Mummy says that Im always upto something and causing mischeif she says its ok as I always have a cheeky smile.

In April 2009 I was sadly diagnosed with a condition called Sanfilippo syndrome, also know as MPS111. There is no treatment or cure for Sanfilippo.This means that I will gradually loose all my speech, physical and mental abilities, which means my development will slowly deteriorate until my body is unable to support itself. Mummy and Daddy pray that a treatment is found as they dont want me to go to the angels as they say Im their little ray of sunshine.

Mummy and Daddy have been told that there is a treatment known to dramatically improve the lives of Sanfilippo kids 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 me and hundreds of children like me can receive this treatment that could save our lives.

There are 130 families in the UK who have children with Sanfilippo disease. Mummy and Daddy have been asked to help the MPS Society to create Gift Pages for kids like me to try to help raise the funds and awareness anyway 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 lots of charities out there and money is tight but if you could share this link and everyone just doated £2 then that will get us on the right road to finding treatment for me and other Sanfilippo kids.

Please pass this Gift Page link and our YouTube video www.youtube.com/watch?v=N0pPoQjO5Cgon 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 me with Sanfilippo disease all over the world - with your help we can cure yucky Sanfiippo.

Thank you, Little Miss Tillie Mae

A big Thank you to MPS Society, Wicked Genes, Sarah & Zoe @ The Havon, Carole Gomez, Lisa Smith, Kerry Sloan, Andrea Parker, Louise Baker, Denise Parkinson, Aunty Rach, Mary Faithful, all the staff at St philip Howard pre school, My carer Margaret Connolly(I love her soooo much), Keech Hospice, Handicapped Childrens action Group, Make a wish fountation, Gosh, and a huge Thank you to the team at Manchester Childrens Hospital they take such good care of me every 4 weeks and make my time in hospital home from home.


  • martina

    martina forgacova made a contribution   15 Aug 2013

    Good luck Tillie xx
    Post a reply   
  • gemma

    gemma leavens made a contribution   25 Jul 2013

    Good luck and a round of applause for all of those taking part in the Yorkshire Three Peaks Challenge :) I hope that you manage to raise the full target amount x
    Post a reply   
  • Samantha

    Samantha Reed made a contribution   18 Jul 2013

    Sent from Nappy Cakes R us
    Post a reply   
  • Samantha

    Samantha Reed made a contribution   18 Jul 2013

    Sent from Nappy Cakes R us
    Post a reply   
  • Samantha

    Samantha Reed made a contribution   18 Jul 2013

    Sent from Nappy cakes r us.
    Post a reply   
  • Joyce

    Joyce Thornton made a contribution   04 May 2013

    Well done Kat in running for this charity
    Post a reply   
  • John

    John Wilson made a contribution   24 Apr 2013

    Such an emotionally upsetting story...Just sad I cannot afford to give more. I pray to God that everything works out well for you.
    Post a reply   
  • Michala

    Michala Mawdsley posted a comment   24 Apr 2013

    Thank you to all that donated for Kat running the London Marathon on Sunday. She did amazing. Love from The Mawdsley's xx
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  • Michala

    Michala Mawdsley posted a comment   24 Apr 2013

    Thank you to all that donated for Kat running the London Marathon on Sunday. She did amazing. Love from The Mawdsley xx
    Post a reply   
  • Katherine

    Katherine Caris-Harris made a contribution   24 Apr 2013

    Great time well done.
    Post a reply   
  • jade

    jade wyatt made a contribution   21 Apr 2013

    Well done Kat !! What an amazing run for Tillie :D love Jade, Warwick, Casey and Cleo xxx
    Post a reply   
  • Katy

    Katy Smith made a contribution   21 Apr 2013

    Well done Kat.xx Lots of love Katy and Neil xx
    Post a reply   
  • Ed

    Ed Nicholls made a contribution   21 Apr 2013

    Well Done Kat awesome effort today for a great cause
    Post a reply   
  • Julie

    Julie Rhodes made a contribution   21 Apr 2013

    Fantastic job Kat & for such a super cause; very well done! Best wishes Julie x
    Post a reply   
  • Rebecca

    Rebecca Hartley made a contribution   21 Apr 2013

    Good luck today Kat! Becky x
    Post a reply   
  • Rebecca

    Rebecca Hartley made a contribution   21 Apr 2013

    Good Luck today, Kat! Running for a great cause. Becky x
    Post a reply   
  • Michelle

    Michelle Edghill made a contribution   21 Apr 2013

    Good luck Kat x
    Post a reply   
  • Michelle

    Michelle Edghill made a contribution   21 Apr 2013

    Good luck Kat x
    Post a reply   
  • Tamsin

    Tamsin Wilkins made a contribution   21 Apr 2013

    Good luck Kat running today, will be thinking of you and Tillie Mae, lots of love, Tamsin xxx
    Post a reply   
  • Jolene

    Jolene Gibson made a contribution   19 Apr 2013

    Good Luck for Sunday matey, your running for such a good cause. We'll be thinking of you. Love Jolene and Gareth xx
    Post a reply   
  • Faye

    Faye Mills made a contribution   16 Apr 2013

    Good luck kat x
    Post a reply   
  • Fiona

    Fiona Fullam made a contribution   16 Apr 2013

    Good luck this weekend Kat. Hoping you raise lots for Tillie Mae.
    Post a reply   
  • Rahman

    Rahman Sheik made a contribution   15 Apr 2013

    Good luck Kat I hope you break your time from last year.
    Post a reply   
  • Ali

    Ali Sheik made a contribution   15 Apr 2013

    Good luck Kat. I'm making a donation in aid of Tillie.
    Post a reply   
  • Amanda

    Amanda Chu made a contribution   14 Apr 2013

    Good luck Kat! Xx
    Post a reply   
  • Jane

    Jane Whiting made a contribution   13 Apr 2013

    Good luck to Kat, rasing money for a great cause. Love Jane and Rob x
    Post a reply   
  • Emma

    Emma Sheik made a contribution   13 Apr 2013

    Good luck Kat foe the marathon. What a fantastic cause. Love Emma and Malik
    Post a reply   
  • Ali

    Ali Sheik made a contribution   13 Apr 2013

    Good luck Kat. Donation in aid of Tille Mae.
    Post a reply   
  • salima

    salima sheik made a contribution   10 Apr 2013

    Good luck Kat with the marathron And hope all goes well with Tillie
    Post a reply   
  • Adam

    Adam Sheik made a contribution   09 Apr 2013

    Sponsoring Kat's marathon in aid of Tillie.
    Post a reply   
  • DanFrank

    DanFrank Jewellery made a contribution   03 Mar 2013

    From Danfrank Jewellery & Danielle Olivier-Thomas... May you raise every penny needed xXx
    Post a reply   
  • Paul

    Paul Hanley made a contribution   26 Feb 2013

    Good luck little one. From P,D,I&J xxx
    Post a reply   
  • Sharon

    Sharon O'toole made a contribution   18 Feb 2013

    Good luck with your fundraising..Tillie Mae is a beautiful little girl As we pray she gets the treatment she needs x x
    Post a reply   
  • Michelle

    Michelle Cowling made a contribution   18 Feb 2013

    Hope the ball goes well on Saturday and hope you manage to raise lots of money for gorgeous Tillie Mae and other MPS children. Lots of Love, Michelle, Jeff and Abigail
    Post a reply   
  • Melanie

    Melanie Hancock made a contribution   17 Feb 2013

    Hope you raise loads at the charity ball x mel
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  • Melanie

    Melanie Hancock made a contribution   17 Feb 2013

    Hope you raise loads at the charity ball .. Mel
    Post a reply   
  • Becky

    Becky Young made a contribution   05 Feb 2013

    With Love. Becky, Nigel, Lucas and samuel X
    Post a reply   
  • Debbie

    Debbie Sharpe made a contribution   29 Jan 2013

    After I read about your story on the Daily Mail website I was hoping there was a website for donations as my heart goes out to you and I really do pray you get the treatment available to you. It's heartbreaking that it is so expensive. Lots of love xx
    Post a reply   
  • Escape

    Escape St Neots made a contribution   13 Jan 2013

    We held an open evening and raised money for this charity by holding a raffle in which we raised £210 and we have put in the other £40 to round it up to £250 Good luck on meeting your target, let us know if we can help in any other way Escape Beauty Salon, St Neots
    Post a reply   
  • Sean

    Sean Ogley made a contribution   09 Jan 2013

    Best wishes
    Post a reply   


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