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Frances Topham raised £5,560 from 232 supporters

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Closed 18/12/2019

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£5,560
raised of £1,000 target by 232 supporters

    Weʼve raised £5,560 to Give Matilda a Chance

    Funded on Wednesday, 18th December 2019

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    Story

    Just when we thought we had been through enough after 5 weeks on the NICU/SCBU after Matilda was born at 32+5, shortly before she turned six months old she had a series of seizures which has led to a diagnosis of West Syndrome (also known as Infantile Spasms) - a rare form of epilepsy usually presenting itself before the age of 1. We then found out the bleed on her brain (Intraventricular hemorrhage) that she had at birth had caused Periventricular leukomalacia (PVL) - damage to the white matter of the brain that is responsible for movement, which was caused by the traumatic bleed on her brain when she was born. The PVL caused the West Syndrome. As a result, her development will be severely delayed. Doctors cant tell us what the future will hold - some children will go on to develop as expected, following extensive input from Physiotherapy and Speech & Language Therapy, but some children aren‘t so fortunate and often end up unable to walk without aids, dependent on wheelchairs, severely mentally handicapped, and some children will die as a result of other complications. Matilda is also at high risk of developing Cerebral Palsy, but we won‘t know until she gets a bit older.

    Before this, Matilda was developing well for her corrected age - the seizures took that away from us. Our laughing & smiling girl who looked at us, could roll over and had just started to control her head was snatched from us by West Syndrome. We‘ve now had to start again from stratch.

    After discussing with other parents who are going through similar to what we are, we are crowdfunding for private physiotherapy as some families only have access to 1 hour of treatment A MONTH! We are also crowdfunding to be reveiwed by a service called Snowdrop - they provide tailor made programmes for children with developmental problems to stimulate and enhance abilities. Please feel free to have a look at their website http://www.snowdrop.cc/about-us.aspx

    At the moment, her seizures are under control, which is an absolute blessing, but we are always under constant fear she will relapse. We don‘t know what the future holds but we do know some things - Our daughter is a fighter who deserves a chance.

    Updates

    4

    • Frances Topham4 years ago
      Frances Topham

      Frances Topham

      4 years ago
      Update from the Page owner

      Share this update to help us raise more

    • Frances Topham5 years ago
      Frances Topham

      Frances Topham

      5 years ago
      Update from the Page owner

      Absolutely amazing 👏🏻 We are blown away by all the love and support we have received. This will go so far for Matilda’s care, thank you so so much ❤️

      Share this update to help us raise more

    • Frances Topham5 years ago
      Frances Topham

      Frances Topham

      5 years ago
      Update from the Page owner

      Share this update to help us raise more

    5 years ago

    Frances Topham started crowdfunding

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    Page last updated on: 12/19/2019 10.28

    Supporters

    232

    • Helen Lloyd

      Helen Lloyd

      Sep 27, 2019

      With love n hugs from us all at North District Nursing Team. Xx 💜💜💜

      £100.00

    • Anonymous

      Anonymous

      Sep 13, 2019

      £20.00

    • Nichola S

      Nichola S

      Sep 13, 2019

      £10.00

    • Uncle T

      Uncle T

      Sep 10, 2019

      £200.00

    • Paul Conium

      Paul Conium

      Aug 31, 2019

      With our best wishes xxx Miki and Paul

      £50.00

    • Jaymes Truman

      Jaymes Truman

      Aug 30, 2019

      <3

      £30.00

    • Lydia Topham

      Lydia Topham

      Aug 30, 2019

      Thinking of you all x

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    Frances Topham

    Frances Topham

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