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Emily Wheatley raised £750 from 27 supporters

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Closed 09/05/2019

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£750
raised of £750 target by 27 supporters

    Weʼve raised £750 to arrange for Ella to see a GLUT1 specialist to access the correct treatments and services.

    Funded on Thursday, 9th May 2019

    Don't have time to donate right now?

    Story

    My daughter, Ella, has a rare genetic condition, called Glucose Transportor Deficiency (GLUT1). She suffers with seizures, movement disorders, development delays and anxiety as a result. You can see how this impacts her by following this link: https://lm.facebook.com/l.php?u=https%3A%2F%2Fwww.itv.com%2Fnews%2Fwales%2F2018-07-19%2Fthe-welsh-government-is-failing-my-child-mother-calls-on-nhs-to-treat-rare-form-of-epilepsy%2F%3Ffbclid%3DIwAR0PjMpUozsA00dy0XB-N5U5JaLyxHPPHFhJq4H0gZo-ZzKf1J4osCID9J4&h=AT063q5VCyp0NUxrQznG-tmmk12RUH0JC16bFbj027t5PHkskIPejcfOL9IccggSpr-zei47pI0fI8JGWts6yOizPVRzNPHeVUD3re0CwBQXlEj0mfql_K1wNwKgHG__e2UZISTWiOk8Hw1agNMTEO0NlVTFAmdxgF0

    Ella is a kind, happy soul who has taken treatment after treatment with a smile on her face. The picture you see is the day after she had a gastronomy button fitted.... even with limited pain relief! She is truly an incredible human and I am so proud to be her Mum!

    The only treatment for this condition is the ketogenic diet. Ella started this high fat, low carbohydrate and adequate protein diet December 2017. The diet has decreased the number of seizures Ella has as well as improve some of her cognitive abilities but it has not allowed her to live a normal life. Ella struggled to consume the diet so in November 2018, she had a gastronomy button fitted. The button has reduced Ella's anxiety but we are still not symptom free.

    Sadly, there are no specialists in the UK for Ella to see in order to create a plan to manage her symptoms and allow her to live her best life. The most experienced specialist is in America, who we would love to see but with costs coming to approximately £3,000, we are aiming to see another specialist in Germany. Costs to see him come to approximately £1,000.... which is what I am hoping to raise.

    I know there are many worthwhile causes so if you choose ours, I would like to thank you, from the bottom of my heart ❤❤❤

    Updates

    13

    • Emily Wheatley5 years ago
      Emily Wheatley

      Emily Wheatley

      5 years ago

      If you have any questions, find me on facebook and send me a message (Emily Wheatley or Life as a GLUT1 Keto Mum) ❤❤❤

      Share this update to help us raise more

    • Emily Wheatley5 years ago
      Emily Wheatley

      Emily Wheatley

      5 years ago

      Another thing that research has demonstrated, is that there is a direct link between commencement of diet and cognitive abilities. If the diet starts later than age 4, the damage is almost impossible to undo. This is why I'm working hard to ensure procedures are changed for consultants and doctors are aware to consider GLUT1 based on known symptoms. The sooner GLUT1 is diagnosed and the diet starts, the better long term outlook. I hope this update has helped you understand what you supported. ❤❤❤

      Share this update to help us raise more

    • Emily Wheatley5 years ago
      Emily Wheatley

      Emily Wheatley

      5 years ago

      For example, if you teach a child how to measure the angle of a triangle, they will be able to apply that knowledge to measure the angle in a room or check a door frame is straight. Children with GLUT1 typically struggle with that and need to be taught literally. That of course means many subjects are challenging for them. Typically GLUT1 patients excel with social skills though... which again is typically Ella!

      Share this update to help us raise more

    5 years ago

    Emily Wheatley started crowdfunding

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    Page last updated on: 2/18/2019 21.34

    Supporters

    27

    • Lorraine Wilkinson

      Lorraine Wilkinson

      Feb 3, 2019

      Hope the trip goes well lovely, will be thinking of you 💗

      £20.00

    • Kim

      Kim

      Jan 27, 2019

      £10.00

    • Stephen Tamplin

      Stephen Tamplin

      Jan 27, 2019

      Keep going, trust the venture is successful for Ella. Love Uncle Steve and Aunty Janet xxx

      £30.00

    • Helena Maddox

      Helena Maddox

      Jan 26, 2019

      I feel blessed to have this little girl in my life. Despite all she has to go through there is always a smile on her face. I hope that you get the answers you deserve so much. Wishing you all the luck

      £50.00

    • Anonymous

      Anonymous

      Jan 26, 2019

      £10.00

    • Amy Baker

      Amy Baker

      Jan 25, 2019

      £20.00

    • Adam Wheatley

      Adam Wheatley

      Jan 25, 2019

      £30.00

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    About the fundraiser
    Emily Wheatley

    Emily Wheatley

    I am Ella's Mum. Ella come in to my life as my miracle... I didn't think I could have children and then a hospital error almost led to an abortion. She is my whole world and all I want is for her to have the best chance at living a healthy and happy life in spite of her illness.

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