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Amanda Lilley raised £17,008 from 260 supporters

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Closed 01/10/2019

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£17,008raised of £12,500 target by 260 supporters

    Weʼve raised £17,008 to To fund selective dorsal rhizotomy surgery for Seth which is not available on the nhs for his grade of cerebral palsy.

    Funded on Tuesday, 1st October 2019

    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 nonprofit.

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    Story

    We are looking for hep to raise £12500 to fund SDR surgery (selective dorsal rhizotomy) for our son seth. Seth has cerebral palsy grade 5 and this operation is only currently funded by the nhs upto grade 3. The operation is being perfomed by seths neurosurgeon upto grade 6 with great success. The operation is to enable children with lower level cerebral palsy to walk however in children with higher level cerebral palsy it is being used to stop pain caused by spasticity. Seth has a mix of dystonia and spasticity, seth can have surgery for his dystonia on the nhs which involves a pump being fitted into his abdomin which distributes baclofen (muscle relaxant drug) through a catheter directly to his spinal cord which he has had the test for with fantastic results, this can only be fitted when seth is much bigger as his body is to small to hold the pump at present. Seths dystonic and spastic tone causes him a lot of pain which when he tries to relax to sleep is unbearable for him, therfore he doesnt sleep well and is very upset during the night. Seths tone causes so much stiffness he is unable to use his muscles correctly and simple tasks such as getting dressed can cause him real pain which will continue to worsen as he gets bigger.

    Liasing with seths neurosurgeon within a year we may not even be able to get seth into his wheelchair as his tone and frustration becomes worse it will be extremley diffucult to bend seths muscles. Seth is a very bright child despite his physical disabilities so he knows what he wants to do, he wants to play with other children and he wants to run around like other children so he becomes even more frustrated and the tone then becomes worse and worse and seth is becoming incresingly upset with his pain, his quality of life is the most important thing and we cannot bear to see him in any more pain. So right now the only option we have is SDR surgery which will completely take away his spasticity and reduce his pain dramatically, it will enable him to learn how to use his leg muscles correctly, enable him to have more comfortable sleep, improve speech and upper limb muscle tone, relieve constipation and improve continence. Immediatley after surgery the spasticity is gone so that pain is gone, other results improve anything upto 2 years so this would change seths life dramatically and by then he will be big enough for his pump to work along side.

    We are appealing for help to raise these funds to give Seth a better quality of life, happier and more compfortable, please help in anyway you can every penny counts. Thank you so much for taking the time to read our story.

    Mandy & Lee xxx

    Updates

    13

    • Amanda Lilley2 months ago
      Amanda Lilley

      Amanda Lilley

      2 months ago

      Thank you so much to everyone for all your support we are truly blessed ❤️ Thank you to Kim and organisers and everyone who took part in the rounders tournament we had a lovely day and thank you for continuing to support Seth into his future 😘

      Share this update to help us raise more

    • Amanda Lilley3 months ago
      Amanda Lilley

      Amanda Lilley

      3 months ago

      We just wanted to let you all know Seth has now had his surgery, he is now a week post op and the results are absolutely amazing this has changed his life so much 😊 Thank you to each and everyone of you who donated and helped to raise the funds to make this surgery possible lots of love to you all ❤️ Thank you

      Share this update to help us raise more

    • Amanda Lilley5 months ago
      Amanda Lilley

      Amanda Lilley

      5 months ago

      Huge well done to Ryan and the lads completing the national 3 peaks in 22 hours 19 minutes and 30seconds, well done amazing achievement thank you so much 💙

      Share this update to help us raise more

    7 months ago

    Amanda Lilley started crowdfunding

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    Page last updated on: 9/26/2019 09.01

    Supporters

    260

    • Caroline & Ste Parr

      Caroline & Ste Parr

      Sep 26, 2019

      Donation from Carole & Ste Parr towards money raised at Adlington CC Rounders Tournament

      £1,000.00

    • Anonymous

      Anonymous

      Sep 24, 2019

      Donation for acc rounders tournament

      £9.00

    • Mark

      Mark

      Sep 22, 2019

      £500.00

    • Donna Knowles

      Donna Knowles

      Sep 13, 2019

      Fantastic day at Adlington CC

      £500.00

    • Susan Donnelly (friend of Kim Power)

      Susan Donnelly (friend of Kim Power)

      Sep 5, 2019

      All the best for Seth's future, hope this bit helps

      £50.00

    • Jo millington

      Jo millington

      Sep 4, 2019

      £40 donation from Jim at Basetech Adlington via jo millington adlington cricket club rounders member xx

      £40.00

    • Sarah King

      Sarah King

      Aug 29, 2019

      Hope you raise loads for Seth, much love xxx

      £50.00

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    Amanda Lilley

    Amanda Lilley

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