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£1,776raised of £700 target by 57 supporters

Weʼre raising £700 to help little Jonas to keep his rehabilitation programs going

Newark, UK
11 days to go

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Story

Quite of few of you already heard Jonukas story and that last time we raised a substantial amount of money with the help of all good people. Jonukas with his parents has visited Snowdrop clinic in UK, also visited the cerebral palsy clinic in London and the rest of the money was used on his rehabilitation centres which are very expensive and mostly are private.

Jonas was diagnosed with CDKL5 disorder , CDKL5 is a rare x- linked genetic disorder that results in early onset, difficult to control seizures and severe neurodevelopmental impairment that was first identified in 2004. Most children with CDKL5 do not walk, almost all do not talk and they have a range of other symptoms. Sadly Jonukas has a visual impairment, most of times he is laid down as he doesn’t hold his head. There is no cure for the brain damage but with the help of lots of therapy we can help to reduce the impact of his condition has on him.

Unfortunately due to the limitations the NHS face they cannot provide Jonukas with the intensive therapy he needs. The therapies, exercises equipment and extras, come at a high cost and are not usually financially viable to many.

Jonukas is currently abroad for 3 months in rehabilitation clinic where he is trying to learn to hold a toy, to stand on his feet and to hold his head. He really hates to do this. Everyone around definitely can hear when Jonas is doing his exercises:).

We are hoping to raise some money to support Jonukas to access these therapies for as long as possible, he is making progress and this wouldn’t be happening without the support we have been getting. Our hope is one day Jonas will walk and be able to communicate.

Any donation makes a difference to the therapies Jonukas can have. Let’s make this beautiful child’s life better and his fighting parents that are not given up.

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Updates

3

  • Jurate Pupkyte2 months ago
    Jurate Pupkyte

    Jurate Pupkyte

    2 months ago

    Jonukas turned 2 years old yesterday and his parent organised Mickey Mouse party for their little boy. Jonukas couldn't see with his beautiful eyes what amazing party his lovely parents did for him and was having his daily seizures through the day, but I am sure he felt good vibes around him. Get well, our little fighter !!!

    Update from the Page owner

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  • Jurate Pupkyte2 months ago
    Jurate Pupkyte

    Jurate Pupkyte

    2 months ago

    As you are all probably aware, we had completed our Three Peaks challenge in one piece !!! :) It was so hard this time, but I just kept going having my beautiful nephew Jonas in my thoughts and managed to do so over 24 hours and 25 minutes. We would like to thank you all from the bottom of our hearts for your generous support for Jonukas and for those, who still would like to contribute towards, the link will be open until 27/08/2018. Thank you!!! Xx

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  • Jurate Pupkyte3 months ago
    Jurate Pupkyte

    Jurate Pupkyte

    3 months ago
    Update from the Page owner

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4 months ago

Jurate Pupkyte started crowdfunding

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Page last updated on: 8/6/2018 6:11 PM

Supporters

57

  • Anonymous

    Anonymous

    Aug 6, 2018

    Get well soon Jonas ;) 🐘

    £20.00

  • Anonymous

    Anonymous

    May 31, 2018

    Well done Jurate and little fighter Jonas , Auntie and girls x

    £10.00

  • Radoslaw Spaczynski

    Radoslaw Spaczynski

    May 29, 2018

    £20.00

  • Derek Hands

    Derek Hands

    May 29, 2018

    Wishing the best for this great family. Well done Jurate keep climbing those peeks!

    £50.00

  • David Kay

    David Kay

    May 28, 2018

    £25.00

  • Judith Peacock

    Judith Peacock

    May 24, 2018

    Wishing the team and the little guy all the very best.

    £20.00

  • barry bawdon

    barry bawdon

    May 23, 2018

    £20.00

Jurate Pupkyte

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About the fundraiser
Jurate Pupkyte

Jurate Pupkyte

Newark, UK

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