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Karen Cook raised £485 from 23 supporters

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Closed 30/06/2020

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£485
raised of £2,000 target by 23 supporters

    Weʼve raised £485 to raise awareness for primary lymphoedema proceeds go to St Oswlads and the lymphoedema support network

    Funded on Tuesday, 30th June 2020

    Don't have time to donate right now?

    Story

    Our beautiful daughter willow was born April this year shes the most beautiful, amazing little girl we could have ever asked for ! Born with stunning port wine stains one of which in the shape of a giraffe covering her back and hips. 2 weeks into willows life a trip to hospital unveiled willow was a very special little princess, after her 1st MRI it was discovered she has complex vascular malformations and lymphatic malformations with fatty tissue hypertrophy to both legs, left being more severe. Willow also has lymphatic malformations and vascular malformations surrounding her bowel and rectal passage.

    We have an amazing support system from several hospitals in the UK soon stretching right to London.

    Myself and my husband want to give back for the help we are receiving but most importantly raise awareness of her condition so that hopefully when willow grows up more people will be aware of lymphoedema as everyone we speak to does not know of this condition.

    Primary lymphoedema is caused by alterations (mutations) in genes responsible for the development of the lymphatic system.

    The "faulty" genes cause the parts of the lymphatic system responsible for draining fluid to not develop properly or not work as they should.

    Willow has undergone genetic testing which showed she has a gene mutation in the pik3ca gene. This causes her to have pik3ca related overgrowth syndrome/spectrum, her symptoms are in keeping alongside klippel trenaunay webber syndrome and more. We cannot give willow a definite diagnosis as she has symptoms of various conditions under this spectrum.

    She currently has one kidney larger than the other which is under close monitoring.

    Very recently her lymphedema in her back has begun to swell also.

    This is just the beginning of a big adventure for us and Willow.

    All proceeds will go to St Oswalds & The Lymphoedema support network.

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    Karen Cook

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      5 years ago

      Karen Cook started crowdfunding

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      Page last updated on: 6/24/2020 21.48

      Supporters

      23

      • Archie

        Archie

        Jun 24, 2020

        Good luck!

        £20.00

      • Heather

        Heather

        Jun 24, 2020

        Best of luck with your adventure xx

        £20.00

      • Sandra hayes

        Sandra hayes

        Jun 24, 2020

        £10.00

      • Anonymous

        Anonymous

        Apr 19, 2020

        Our daughter is a few months older than yours and also has KTS and Lymphedema. So I know it's really difficult! I'm full of respect for you for making the time to raise funds for the hospital :).

        £20.00

      • Barbara Norton

        Barbara Norton

        Apr 1, 2020

        God bless her, I hope she’ll do well. I’ve been suffering with lymphoedema for 40 years. Lots of love x

        £40.00

      • Julia & Joan Peacock

        Julia & Joan Peacock

        Mar 27, 2020

        My mum and I read about Willow in the LSN newsletter and were so moved. How proud you must be of your amazing , beautiful daughter.

        £40.00

      • Christine and Tony

        Christine and Tony

        Mar 13, 2020

        Hope you reach your target Karen, you really shouldn't have a problem when people see Willows beautiful face ❤

        £10.00

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      Karen Cook

      Karen Cook

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