Thanks for looking at my Just Giving page. This page has been set up to raise funds, awareness and support to anyone living with a neurological condition, their family, friends and carers.

But, primarily to show my support to my little brother Chris Haynes who once could run, now can't run, but one day WILL run again x

Cutting a VERY long story short, my brother had been feeling a little ’under the weather’ for a while just before he was due to go on holiday in August 2017. He thought he should call in to the doctors to get checked out before going. The doctor prescribed him some rest and sunshine and as he said, luckily that’s just what they were about to do the following week. They set off to Cornwall for a much-needed holiday. During their time there, after almost a week, he took to bed with a headache. The next morning, he could barely lift his head from the pillow. Complaining of pains in his neck, the rear of his head and his eyes ’shaking’ they went to A&E. He was kept in for tests including a lumbar puncture and CT scan as they wanted to be sure it wasn’t meningitis. He was sent away with the all clear. A following couple of weeks saw a rapid change in his symptoms, from headaches, nausea and REM, to a change in his gait, his speech becoming slurred. He also became forgetful and confused and increasingly anxious. Many trips back and to the GP, A&E then he was signed off work with Labyrinthitis and headaches’, given anti-nausea tablets and sent on his way. The following week he was back at A&E with whole body tremors and unable to speak without humming in between words, often unable to think of what he was trying to say. He was sent away... The next day he was taken back. This time he was admitted in and referred for an MRI and more blood tests...then sent home. Our dad arranged for a private consultation which sped up the MRI appointment. During this appointment the consultant hinted that he might know what he was in fact suffering from however, didn’t want to commit until he was sure. All scans and bloods came back clear which flummoxed the consultants apart from one. Thankfully. Eventually he was diagnosed with Oposuclunu Myclonus Ataxia Syndrome which, according to research, is a very rare condition affecting 1 in 10,000,000. In laymen terms this is a post-viral infection that has attacked the base of his brain affecting gross and fine motor skills.

Since his diagnosis, Chris was admitted to Warrington hospital. He spent many weeks in Warrington hospital, Walton Neurological Hospital and a rehabilitation centre in St Helens. He has received a huge dose of immunoglobulin, various anti epilepsy and stroke medication. Fast forward to today, he continues with lots of different therapies, medication and now walks with a stick. He no longer suffers from OMS but as a result of this he is left to battle daily with Functional Neurological Disorder which brings its own challenges. He has been forced to give up his job as a driver and his wife has also given up her job in retail to become his full-time carer. As a family, they have been through so much. This illness has put so much pressure on them and has affected their whole family unit in every way imaginable. It is unclear WHEN he will return to work but we are sure he will in time. Despite all of this, we are very grateful that he is with us and we can fight this battle with him and support them through this journey.......Every Step Of The Way.

So, the ultimate goal is to complete the Loch Ness Marathon on October 6th 2019. In the run up to this I will be taking part in a number of events such as, 5k, 10k, 5miles, half marathon, Gladiator... road, trail, cross country... all of these will support my training and fund raising. Kicking off with Mad Dog 10k 2019 on 3rd Feb! 

Love you Chris x

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