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Kerry Handley raised £96,972 from 2102 supporters

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Closed 14/07/2021

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£96,972
raised of £110,000 target by 2102 supporters

    Weʼve raised £96,972 to help fund life changing spinal surgery for our little girl. Anything over £90k will cover JG fees, aftercare appointments, scans, physio

    Coventry
    Funded on Wednesday, 14th July 2021

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    Story

    Our beautiful little girl Macy is just 12 years old. She is incredibly creative, a skilled artist, a thrill seeker, a naturalist, an ice skater, a member of Mensa and diagnosed with ASD/Asperger's.

    In July 2019 we noticed a lump on Macy's back near her spine. An x-ray uncovered abnormal curves in her spine as well as a rotation, not long after, she was diagnosed with idiopathic scoliosis. The consultant provided her with a brace which she needed to wear for 20 hours per day. The brace was uncomfortable, restrictive and rubbed on her neck, in between her legs and under her arm which triggered her severe sensory issues which over time has massively impacted on her mental health. Despite this, Macy persevered and tolerated the brace as she, like us, hoped that it would prevent the need for an operation.

    In July 2020 an x-ray showed no significant change to Macy's curves, we were happy that the brace seemed to be working and after some therapy sessions, Macy was able to manage her sensory issues a little better.

    Last week we had a further x-ray the results of which have been devastating. Macy's top curve has increased from 30 degrees to 44 degrees and the bottom curve from 28 degrees to 37 degrees. We have been told that this is a significant and abnormal rate of increase which has pushed Macy in to the realms of spinal fusion surgery should there be further increase, being at the beginning of her growth spurt this is highly likely.

    The NHS option is to continue to brace, hope that there is no damage to Macy's internal organs and spinal cords then when her spine stops growing it is likely she will need spinal fusion which involves fixing metal rods to the length of her spine, due to her having a double curve this will restrict her movement and leave her with a huge scar from the back of her neck down to the bottom of her back.

    There is however an alternative. Vertebral Body Tethering (VBT) which in essence is an internal brace. The recovery is much quicker than fusion, back to school after just 6 weeks, her range of movement will be near normal with minimal impact on her future and the scarring is barely noticeable. This is a break through treatment widely used outside the UK which is proactive and can prevent the need for spinal fusion. VBT had been featured on BBC news. https://www.bbc.co.uk/news/uk-wales-43642026. Many parents have been forced to take their children outside of the UK for treatment however there is an amazingly talented surgeon here in the UK who is very experienced and has had high success with many patients.

    VBT has limitations and a specific selection criteria which at the moment Macy fits. Unfortunately, further increase to the curvature of her spine or waiting longer could reduce the flexibility of her spine and push her outside the possibility for VBT so time is of the essence. We must find the funds to pay for the surgery now before it is no longer an option leaving Macy at higher risk of other complications and the only option of spinal fusion.

    We haven‘t taken this decision lightly and are confident that VBT offers Macy the best chance of growing up to have a close to normal life and be able to enjoy all of the things other girls her age enjoy.

    Our healthcare insurance will not cover the surgery as scoliosis is classed as as a chronic condition.

    We appreciate it is a massive ask and not one we are comfortable with but we will do anything for our little girl so please, give what you can and help Macy live her best life.

    Updates

    25

    • Kerry Handley1 year ago
      Kerry Handley

      Kerry Handley

      1 year ago

      So grateful Macy has been cared for by such an amazing team & had the opportunity to be first in the UK to have @zimmerbiomet system. This is a pioneering approach to scoliosis which gives patients a choice other than fusion. Thank you @Darren_Lui and Jason Bernard 🙌 #scoliosis #vbt #macysvlog

      Update from the Page owner

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    • Kerry Handley1 year ago
      Kerry Handley

      Kerry Handley

      1 year ago

      Less than 24 hours out of double curve VBT (major spinal surgery) and Macy is powering through marching at the side of her bed. Obviously the meds are helping but physios said not many achieve that within the first day. Go Macy!! #macysvlog #scoliosis #vbt

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    • Kerry Handley1 year ago
      Kerry Handley

      Kerry Handley

      1 year ago

      Macy insisted doing a video entry literally as soon as she came out of theatre! Clearly the meds were very effective! Worst 9 hour wait of our lives but she’s doing brilliantly and the surgeons are very happy with the result x

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    2 years ago

    Kerry Handley started crowdfunding

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    Page last updated on: 7/10/2021 06.11

    Supporters

    2102

    • Anonymous

      Anonymous

      Jul 10, 2021

      £5.00

    • Anonymous

      Anonymous

      Jun 30, 2021

      £5.00

    • Neil Ashford

      Neil Ashford

      Jun 30, 2021

      £5.00

    • Anonymous

      Anonymous

      Jun 28, 2021

      £5.00

    • RAFFLE ALEX STONE (ON KERRY'S FACEBOOK)

      RAFFLE ALEX STONE (ON KERRY'S FACEBOOK)

      Jun 25, 2021

      Hope you are recovering well. Raffle Alex Stone

      £5.00

    • Ben Niro

      Ben Niro

      Jun 25, 2021

      £5.00

    • James Southan

      James Southan

      Jun 23, 2021

      £3.00

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    About Crowdfunding
    About the fundraiser
    Kerry Handley

    Kerry Handley

    Coventry

    Thanks to some incredibly generous people we've reached the £90k original target. This covers the cost of the Consultant Surgeon, required 2nd surgeon, anaesthetist, VBT system, hire of St George's operating theatre & associated costs during Macy's hospital stay after surgery.

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