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Don Smith raised £2,486 from 71 supporters

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Closed 31/03/2020

4%
£2,486
raised of £56,000 target by 71 supporters

    Weʼve raised £2,486 to Give a life to Shona

    Isle of Man
    Funded on Tuesday, 31st March 2020

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    Story

    Shona was like many normal children when growing up - full of life and vitality and always doing something. She left school and worked for a while before going to University. After a couple of years, she suddenly went down with severe tiredness and exhaustion. That was over 6 years ago. Since then she has had many different diagnoses, including EDS (Ehlers-Danlos Syndrome), Chronic Fatigue Syndrome, ME (Myalgic Encephalomyelitis), Fibromyalgia and several others. Her daily life now consists of sleeping at night, waking up and being given breakfast, before staggering to the sofa for another sleep. She easily sleeps 18 hours in a day, but wakes up without feeling refreshed. She doesn't have the energy to hold and drink a cup of tea - everything is drunk through a straw so she doesn't have to hold the cup or bottle. There are times she needs spoon feeding and her teeth cleaning as she has so little energy. Even eating food uses her energy resources, so she needs to sleep after eating. And I mean sleep. A dinner normally ends with a 3 or 4 hour sleep. My wife is full time carer for Shona now. A visit to the Doctor is often the highlight of Shona's week; it sometimes being the only time in a week that she ventures out of the house. She is on many different medications, but they are only to control some of her symptoms - none of them attempt to repair the issues. I took the cover photo on a lovely sunny afternoon when anyone else would have been outdoors enjoying life. But Shona slept the afternoon away, the same as so many others in the last few years.

    There is hope, though. Online friends in medical groups suggested a new route to try. To this end, we took Shona to a facility in London that takes MRI scans when the patient is upright, with the spine / neck in different attitudes. The results of this were sent to a Neurosurgeon in Spain that specialises in spinal fusion for EDS patients, Dr. Gilete . He opined that Shona's spine is misaligned and recommended she visit his clinic in Barcelona . We took Shona to his clinic, and he confirmed her spine is twisted and the top vertebrae are unstable and crushing the Spinal cord and Jugular vein, resulting in the majority of her symptoms. The likelihood is Shona does not actually have ME/CFS, but the crushing causes similar symptoms. The condition is known as Cranio Cervical Instability . Unfortunately, the NHS do not perform surgery for this condition in patients with EDS - it can generally only be done by a couple of specialist Neurosurgeons such as Dr. Gilete and Dr. Henderson who works in the USA.

    Dr. Gilete and his team have had some spectacular success stories in these types of operation (Surgical routine ), resulting in life-changing outcomes for patients. One example is a lady called Karen Scott who underwent her surgery recently, and was able to walk again for the first time in several years (Karen Scott - (scroll to June 3))

    The operation to fix the top few vertebrae to the skull takes a highly skilled team time to perform, and recovery from the operation requires 4 - 6 weeks in the facility in Barcelona before being able to travel home to continue the recovery. As you can imagine, this operation is not cheap, and the £50,000 price tag does not cover flights or accommodation during pre-surgery preparation days. To this end, we are looking to ordinary people to help us fund this operation and give Shona a life - a normal life that doesn't include a mobility scooter, lightweight cutlery, straws for every drink etc.

    A small donation from you can really help to change Shona's life

    Updates

    9

    • Don Smith9 months ago
      Don Smith

      Don Smith

      9 months ago

      Just a quick update - we really do appreciate all your help and donations so far. Shona has recently been to see a UK surgeon in Cambridge and had a CT Venogram which showed really restricted blood flow from her brain. Visit www.slowsmith.com for details. If you visit that site, you will also see a breakdown of her major costs this year - nearly £5000 on direct medical fees without considering flights, hotels etc! Shona is still trying to raise money, so if you can help her, she will really, really appreciate it! Let's hope for a great 2020!

      Share this update to help us raise more

    • Don Smith1 year ago
      Don Smith

      Don Smith

      1 year ago

      Shona has now raised over £2200 on JustGiving thanks to some amazingly kind folk. In addition, she has £1500 from the EDS Group and very generous individual donations from people giving directly. In total, she has over £5000 - we really do appreciate all the help from everyone who has contributed. Here's hoping 2020 is the year Shona can be repaired and start to live her life again!

      Share this update to help us raise more

    • Don Smith1 year ago
      Don Smith

      Don Smith

      1 year ago

      Again, massive thanks for all your contributions. As well as www.slowsmith.com to keep all the info together, we have started a fundraiser on Facebook (https://www.facebook.com/donate/916042045412644/), as it may be easier for some people to contribute there. Shona has just been granted a huge £1500 from the Mind Body EDS charity towards her fund, so we are now near to £4000 - still a long way short, but a substantial sum nonetheless. We really do appreciate anything you can do to spread the word and try and help Shona to fund her operation!

      Share this update to help us raise more

    1 year ago

    Don Smith started crowdfunding

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    Page last updated on: 2/14/2020 11.24

    Supporters

    71

    • Sarah Melvin

      Sarah Melvin

      Feb 14, 2020

      Donation made in conjunction with Courtney's Cards <3

      £10.00

    • Freyja Bibby

      Freyja Bibby

      Feb 10, 2020

      <3

      £50.00

    • Grace

      Grace

      Jan 2, 2020

      £10.00

    • Sarah

      Sarah

      Dec 9, 2019

      Thank you Courtney for the card

      £10.00

    • Anonymous

      Anonymous

      Nov 27, 2019

    • Anonymous

      Anonymous

      Nov 27, 2019

      Just heard about Shona. I hope that you manage to raise the funds and that she makes a spectacular recovery.

    • Paul Evans

      Paul Evans

      Nov 24, 2019

      Hi, Don. I just stumbled upon Shona’s story on FB - friend of a friend. I’m donating £40 and I will share Shona’s story. I Will check back from time to time, and I wish Shona well.

      £40.00

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    About Crowdfunding
    About the fundraiser
    Don Smith

    Don Smith

    Isle of Man

    Father of a normal girl that now needs a mobility scooter, but can be fixed with your help!

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