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Amanda Lilley

Amanda Lilley is crowdfunding

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£4,315raised of £12,500 target by 74 supporters

Weʼre raising £12,500 to To fund selective dorsal rhizotomy surgery for Seth which is not available on the nhs for his grade of cerebral palsy.

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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

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Updates

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  • Amanda Lilley9 days ago
    Amanda Lilley

    Amanda Lilley

    9 days ago

    Thank u so much everyone 😘😘😘😘😘😘

    Share this update to help us raise more

  • Amanda Lilley18 days ago
    Amanda Lilley

    Amanda Lilley

    18 days ago

    Thank you so much everyone what an amazing start your all amazing xxx

    Share this update to help us raise more

18 days ago

Amanda Lilley started crowdfunding

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Page last updated on: 5/22/2019 12.51

Supporters

74

  • Emma Vaga

    Emma Vaga

    May 22, 2019

    Good Luck Mandy & Lee with your fundraising for your beautiful little boy xx Hope you reach target soon xx take care xx

    £30.00

  • Steve Braidwood

    Steve Braidwood

    May 22, 2019

    Best wishes from everyone at Roy Braidwood & Sons Transport Ltd, hope you reach your target soon.

    £100.00

  • Natalie Proud

    Natalie Proud

    May 21, 2019

    £10.00

  • Mick nicholls

    Mick nicholls

    May 21, 2019

    All the best Lee and mandy! Hope you get to were you need to be with the fundraising... much love mick and family x

    £100.00

  • Anonymous

    Anonymous

    May 21, 2019

    £100.00

  • Rebecca Sewell

    Rebecca Sewell

    May 21, 2019

    Good luck with the fundraising for your brave little Seth! Love The Sewells

  • Anonymous

    Anonymous

    May 21, 2019

    £100.00

Amanda Lilley

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Amanda Lilley

Amanda Lilley

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