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Raj Nerr raised £65,628.1 from 911 supporters

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Closed 31/12/2017

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£65,628raised of £100,000 target by 911 supporters

    Weʼve raised £65,628 to Help fund Jaydan's curable brain surgery treatment which is only available in Texas, USA.

    Bedford, United Kingdom
    Funded on Sunday, 31st December 2017

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    Story

    Our son Jaydan who is 12 years old who lives with a rare condition - Hypothalamic Hamartoma which was diagnosed in August 2008 when he was 4 years old. He suffers every day with different types of epileptic seizures, gelastics, complex-partial seizures, drop attacks, tonic-clonic seizures; any combination will happen everyday resulting in him having anywhere up to 10 seizures a day. He has to tolerate a cocktail of strong epileptic drugs daily which have their own side effects and though these meds will only help reduce the number of seizures, they won’t stop them and he will have to take these for the rest of his life regardless.

    He has recently been diagnosed with Autism, ADHD and ODD which are all linked to the condition.

    For the last 3 years we have been following the support and guidance of Great Ormond Street Children’s Hospital who put an application to NHS England to fund the only curable treatment that is available for this rare condition which is only available in Texas, USA. The last 3 years it has been a very difficult period managing Jaydan’s condition as the symptoms worsen and the meds have less effect, we had fought hard put all our hope on the NHS to secure funding and offer the treatment, ONLY to be given the devastating news in November after a long wait that the funding application was refused! And that NHS England will not fund his treatment. At the same time another young boy who has the same rare condition as Jaydan was also refused funding for the same treatment, his parents managed to raise the required funds through crowd funding. The boy successfully underwent the treatment last week in Texas and he is cured and seizure free. This news has given us renewed HOPE, a chance for our Jaydan to be cured, to live a normal life and do the things all other kids do. So….. here we are asking people to open their hearts and help give our son a chance of being seizure free and to live a normal life.

    Please feel free to contact us if you require any further information.

    Many thanks.

    Updates

    28

    • Raj Nerr1 year ago
      Raj Nerr

      Raj Nerr

      1 year ago

      We are so happy to announce that we made the initial payment onto Texas Children's Hospital for Jaydan's curable brain surgery treatment - $115,141.00 👍 Looking forward to receiving the treatment date very soon. 😊 Couldn't have got this far without you all!!! Thank you everyone who have helped, supported, donated for Jaydan.

      Update from the Page owner

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    • Raj Nerr1 year ago
      Raj Nerr

      Raj Nerr

      1 year ago

      A big thank you to the RBS Technology Integration team in Edinburgh for holding - Tombola, Raffle and Cake Bake Sale last week all in support of Hope for Jaydan £1535.00 + £207.00 raised. 😁🤗

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    • Raj Nerr1 year ago
      Raj Nerr

      Raj Nerr

      1 year ago

      Thank you to ROUND DIAMOND Primary School in Stevenage where Jaydan spent his reception and primary school years. This school has been amazing in supporting Jaydan throughout his infant years. £524.05 raised by all the school taking part in a non-uniform day. Amazing! Thank you so much.

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    1 year ago

    Raj Nerr started crowdfunding

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    Page last updated on: 12/31/2017 8:02 PM

    Supporters

    911

    • Anonymous

      Anonymous

      Dec 31, 2017

    • Anne Levy

      Anne Levy

      Dec 30, 2017

      Giving Jaydan what I would be spending on Christmas gifts for Matt, Lyns, Claire, Steven and Paige this year. Lots of love to you all xxx

      £250.00

    • Anonymous

      Anonymous

      Dec 28, 2017

    • Hamayun Ahmad

      Hamayun Ahmad

      Dec 9, 2017

      Doctor treat us but only almighty GOD can heal us. Get well soon...

      £100.00

    • Jamie Brown

      Jamie Brown

      Dec 7, 2017

      All the best from Digital Office Mobility!

      £10.00

    • Raymond Hughes

      Raymond Hughes

      Dec 6, 2017

      CTO Dress Down Day Fund Raiser.

      £471.54

    • Tamil Natarajan

      Tamil Natarajan

      Dec 6, 2017

      Get well soon Jaydan

      £10.00

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    About Crowdfunding
    About the fundraiser
    Raj Nerr

    Raj Nerr

    Bedford, United Kingdom

    Hi this Page was setup by Raj and Jas - Jaydans Parents. We are seeking support from everyone to help us raise some of the vital funds to allow us to get Jaydan the Brain Surgery out in Texas USA which will cure him of his daily seizures. And the chance to live a normal life.

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