5%
£452raised of £8,000 target by 26 supporters

Weʼre raising £8,000 to get to USA to help our daughter live a better life

Location
Lancashire
Time left
55 days to go

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Story

Hi hoping you can help us. We are trying to raise money to travel to America for help ,advice & maybe treatment & also for private conductive therapy classes which have helped so much with Claras learning & interaction. Our precious girl Clara she was born with a rare syndrome called Smith Lemli Opitz .This syndrome is so rare it was undiagnosed for over 7 months within this time Clara was very unwell & 7 months later still hadn't got back to her birth weight which was 4lb 7 ounces. we were feeding her every hr over 24 hrs through her NG tube (nose tube) Clara would vomit after each feed. It was put down to her Cleft Palate. Clara was serverely under weight it was decided she needed a PEG into her tummy & bowel. While in Alderhey hospital Clara finally got diagnosed 6 weeks later.
Her syndrome means that she cannot produce cholesterol this is very important as this developes your brain/body making Clara very small & eating issues (always be fed by a pump 16.5 hours a day) trouble swallowing & aspirating constantly. This means if Clara does not have thickened solution or is sick it goes straight into her lungs & she can drown. Clara was diagnosed as high end so we have been advised she will not do much. We have been told she will never talk & possible never walk. Clara can lose her sight & hearing , does have problems with her liver & heart other organs, this means Clara is terminal.
Smith lemli Opitz is so rare that when we speak to doctors in the UK they will admit they don't know much about it & as a parent this is scary to hear as you go to doctors for help ,for them to tell you they can explain & help your child. So we are asking for help to get us to America where studies are being done. where we can meet other families who can possibly give advice on the everyday issues , talk to their specialis & discuss future treatment. Clara has continued to surprise the specialist she laughs,plays & rolls over ,is even trying to talk she is a fighter xx

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Updates

3

  • Sara Gardner

    Sara Gardner

    2 months ago

    Sara Gardner

    Thank you so much for all the kind donations X

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  • Sara Gardner

    Sara Gardner

    2 months ago

    Sara Gardner

    A big thank to all the kind people that have donated to Claras fundraiser so far you have been great and a huge thank you to Andrew Trafford for his amazing and thoughtful efforts in helping us. Congratulations on doing so great in Ironman

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  • Sara Gardner

    Sara Gardner

    2 months ago

    Sara Gardner

    Thank you sooooo much cuz xxxx

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2 months ago

Sara Gardner started crowdfunding

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Supporters

26

  • Sharon Osborne

    Sharon Osborne

    Dec 2, 2016

    Hope you raise your funds god bless! x

    £10.00

  • Helon Worswick

    Helon Worswick

    Nov 30, 2016

    £8.00

  • Beth Barnes

    Beth Barnes

    Nov 30, 2016

    £5.00

Sara Gardner

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About the fundraiser
Sara Gardner

Sara Gardner

Lancashire

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