6%
£617raised of £10,000 target by 37 supporters

Weʼre raising £10,000 to get to USA to help our daughter live a better life

Location
Lancashire
Time left
9 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

7

  • Sara Gardner

    Sara Gardner

    a month ago

    Sara Gardner

    Thank you so much for all the kind donations especially to Emily Miller for her kind message

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  • Sara Gardner

    Sara Gardner

    a month ago

    Sara Gardner

    Thank you everyone for your kind donations

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  • Sara Gardner

    Sara Gardner

    a month ago

    Sara Gardner

    Hello guys been a while so just giving you an update. We have managed to get Clara on the trial in National Institutes of Health 9000 Rockville Pike Bethesda, Maryland 20892 Clara has done well lately with a good growth in the last 8 months. We are practicing standing in a frame and have even said a word (mama😃) the best word ever!! Even if we never hear another word that's amazing. We are doing a lot of intense physio 3 times a week it's making a big difference. We may have another 3 surgeries in the future will keep you updated

    Update from the Page owner

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4 months ago

Sara Gardner started crowdfunding

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Supporters

37

  • Deborah Body

    Deborah Body

    Jan 12, 2017

    For beautiful Clara x x x x

  • anne royles

    anne royles

    Jan 8, 2017

    £30.00

  • Anonymous

    Anonymous

    Jan 7, 2017

Sara Gardner

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About the fundraiser
Sara Gardner

Sara Gardner

Lancashire

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