Your friends are fundraising. Don't miss out, opt in.

Don Smith

Don Smith is crowdfunding

0%
£2,416
raised of £56,000 target by 68 supporters

Weʼre raising £56,000 to Give a life to Shona

Isle of Man
29 days to go

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.

The page owner is responsible for the distribution of funds raised.

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

Share this story

Updates

8

  • Don Smith3 months ago
    Don Smith

    Don Smith

    3 months 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 Smith4 months ago
    Don Smith

    Don Smith

    4 months 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

  • Don Smith5 months ago
    Don Smith

    Don Smith

    5 months ago

    Shona has an referral to an NHS Neurologist, but we are told the appointment will be 18 months away. With her symptoms getting worse, we just can't wait that long. Plus, we know from many other peoples experiences, that the NHS route will take lots of time and conclude that nothing is to be done. That is why we went with a top class Surgeon in Spain who has the ability and will to actually help people in this condition and has some amazing results! But we need your help! You're contribution could be a life changer for Shona!

    Share this update to help us raise more

6 months ago

Don Smith started crowdfunding

Leave a message of support

Page last updated on: 12/9/2019 13.03

Supporters

68

  • 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

  • Lee-Anne Taylor

    Lee-Anne Taylor

    Nov 16, 2019

    £10.00

  • morgan  taylor

    morgan taylor

    Nov 16, 2019

    £10.00

  • Katie

    Katie

    Nov 14, 2019

    £10.00

Don Smith

Become a supporter

Help Don Smith raise more

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!

Report this Page
Donate