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Portia Thorman raised £980 from 22 supporters

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Closed 29/05/2018

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£980raised of £250 target by 22 supporters

    Weʼve raised £980 to pay for a supportive car seat for Ezra who is fighting Spinal Muscular Atrophy type 1.

    Ramsgate, United Kingdom
    Funded on Tuesday, 29th May 2018

    What is crowdfunding?

    Crowdfunding is a new type of fundraising where you can raise funds for your own personal cause, even if you're not a registered charity.

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    Story

    After a problem free pregnancy and birth, little Ezra was admitted into intensive care for a nasty cold at just 5 weeks old, needing a life supporting ventilator to breathe for him.

    When we finally got him home after nearly a month in hospital, we realised Ezra could no longer grasp, move his legs or hold up his head. He was diagnosed with type1 SMA, the worst form of a devastating progressive disease that means the messages from Ezras brain cant get to his muscles, including the muscles for breathing and swallowing. We were told that, if we were lucky, he might make it to two years old,

    Therefore Ezra is now peg fed and has a ventilator whenever he sleeps. He finds coughing difficult so has a machine to do it for him and a suction machine to suck up the snot- he hates it! He can not sit up- hold his head or move his legs. His cognitive function and the muscles in his face are not affected, He was in intensive care on life support 3 more times throughout his first 8 months of life. Ezra is clever and remains happy and smily through it all!

    A ray of hope came to us, unusually through a drugs company! As yet unlisenced by the NHS, a new drug that had been very succesful in trials in America was avilable through an open access progranme which the Evelina childrens hospital managed to get Ezra on. He has an injection into his spinal fluid 4 times a year. Since starting the drug programme when he was 4 months old, Ezra has not deteriorated- he can hold toys and pass them from hand to hand, he is beginning to gain some head control and can cope with colds at home on his machines.

    Ezra needs a new carseat, one that supports him in the right way for his breathing and that gives him good head and trunk support.

    He loves to play and discover like all one year olds, the toys he can access with such a light touch are hard to find, sensory toys are very expensive.

    We believe in miracles and have faith that our darling Ezra is at the beginning of a long and fulfilling life- though not without challenges that are often expensive to solve!

    Thank you for your help to enrich Ezra’s life,

    Updates

    2

    • Portia  Thorman1 year ago
      Portia  Thorman

      Portia Thorman

      1 year ago
      Update from the Page owner

      Share this update to help us raise more

    • Portia  Thorman1 year ago
      Portia  Thorman

      Portia Thorman

      1 year ago

      You lot are crazy generous- I’m blown away!!! I will open a bank account just for Ezra’s special things ! I can’t express how blown away we are - I had to resign from my job this week so this financial help is an enormous blessing. Love you all x x x

      Share this update to help us raise more

    1 year ago

    Portia Thorman started crowdfunding

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    Page last updated on: 3/10/2018 4:48 PM

    Supporters

    22

    • Anonymous

      Anonymous

      Mar 10, 2018

      Love to you all x

      £30.00

    • Anonymous

      Anonymous

      Feb 15, 2018

    • Jessica Norris

      Jessica Norris

      Feb 7, 2018

      We would love to meet little Ezra one day! We think of you often and are glad to be able to offer a little support. Best wishes from Canada!

      £50.00

    • Claire Hope

      Claire Hope

      Feb 5, 2018

      wishing you lots of love

      £5.00

    • Richard Lewis

      Richard Lewis

      Feb 4, 2018

      Hugs XXX

      £50.00

    • Anonymous

      Anonymous

      Feb 3, 2018

      bless you

    • Chris Banting

      Chris Banting

      Feb 1, 2018

      Good luck x

      £10.00

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    About Crowdfunding
    About the fundraiser
    Portia  Thorman

    Portia Thorman

    Ramsgate, United Kingdom

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