Amy is fundraising

The Beauty Loft Manchester 10k for Guillain-Barré & Associated Inflammatory Neuropathies (GAIN)

£465.00 + £93.75 Gift Aid = £558.75
Donated to Amy’s £500.00 Goal

Amy’s story

John, my Dad, was struck down with GBS(Guillain Barré Syndrome) in November 2010, he was 65, living life to the full looking forward to retirement with his wife, my Mum. But after having the swine flu vaccine, at work, he became weak and began loosing feeling in his hands and feet. 

Within the next 48 hours he was rushed into hospital and placed into a coma as he was very frightened, his body began to loose any control and feeling, unable to breath on his own. This is when Guillain Barré was first mentioned.

He was in the coma for a month where he was placed on life support with a tracheotomy , he almost died on numerous occasions but kept fighting. 

We had never ever heard to Guillain Barré Syndrome. We managed to get the vaccine script that was provided with his flu vaccine and Guillain Barré was listed as a rare side effect.

Once he was woken the effects of his illness became a real living nightmare, like ‘locked in’ syndrome Dad couldn’t speak or move, all he could do was move his eyes. We tried hopelessly to understand what was happening to him, the doctors didn’t really know either, so many questions, no one could answer, so we googled GBS and found GAIN. We contacted GAIN, they helped put us in touch with other people who had had GBS and also answered lots of questions including contact with a GBS specialist, we attended a conference and were able to ask lots of questions . 

He was kept in this state for 9 months in his local intensive care, his movement didn’t return, he was frightened and very scared. We fought to get him moved to a specialist hospital as we felt he needed a specialist Neurological unit rather than a local hospital, Fairfield in Bury, who had tried numerous times to get him off the ventilator but each time lapsed him backwards, again! 

Calling an emergency meeting with his Consultant, Doctors and Nurses we finally managed to get him moved to Salford Royal, once there the ICU team remarkably managed to get him off the ventilator and breathing on his own and tasting a bit of yogurt within 48 hours! It was a miracle! 

He then spent the next 4 months in the specialist hospital before moving into a rehab hospital for almost 12 months. All in all Dad spent nearly 2 years in hospital! 

During this time Dad didn’t get to see his grandchildren very much, as they were not allowed into see him in ICU, but in 2012 Dad returned home not sure what the future would bring. 

He is still paralysed from the neck down, has to have full care with visits from 2 carers, 4 times a day, John and his wife are now 74. His brain function is 100% but his body just doesn’t move.

Guillain Barrë can happen to anyone at anytime, no one knows why or how it happens, just that your own body starts to attack itself. There is no cure! Research needs to be funded.

Please donate what you can, even a small amount help.

Thankyou so much to Zoë for running the Manchester 10K in aid of raising funds for GAIN and hopefully one day finding a cure.

Love John(Dad) and his family xxx

All funds raised will be passed to the charity irrespective of whether my target is reached, not reached or exceeded.


Guillain-Barré & Associated Inflammatory Neuropathies (GAIN)

Guillain-Barré syndrome is a rare autoimmune condition affecting the peripheral nervous system. It causes the nerves in the arms and legs to become inflamed and stop working, usually leading to rapidly ascending paralysis.

An estimated 1,300 people (1-2 people per 100,000) are affected by GBS annually in the UK with a further 650 people (1-2 per 200,000) being diagnosed with CIDP, which is a similar but longer-lasting condition which tends to progress more slowly, or may develop a remitting and relapsing pattern. 

About 80% of those with GBS will make a good recovery, but between 5-10% of people will not survive and the other 10-15% may experience long term residual effects ranging from limited mobility or dexterity, to life-long dependency on a wheelchair. GAIN is the only national organisation in the UK and Republic of Ireland dedicated to helping people affected by these conditions.

What we do:

•          Help people understand and manage GBS, CIDP and the associated variants

•          Promote and facilitate both clinical and non-clinical research

•          Raise awareness of the charity and conditions

GAIN receives no government funding, relying on the generosity of the public to support our work.

Registered Charity Number: 1154843.

Find out more about Guillain-Barré & Associated Inflammatory Neuropathies (GAIN)

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