A dad whose brain is slipping into his spine has only one wish this time of year – to let his daughter ride on his shoulders.
But for Karl Johnston, 35, sadly he will never be able to carry daughter Seren, nine, in this way after he was diagnosed with Chiari Malformation Type 1, where the brain pushes down into the spinal canal, in 2016.
Karl spent eight years trying to get a diagnosis, after battling symptoms including intense and debilitating neck pain, light-headedness, fatigue and numbness in his arms.
The dad-of-one, from Wallasey, Wirral, is now speaking out to raise awareness of Chiari Malformation.
Karl said: “A lot of people felt sorry for me when I finally got a diagnosis but it was a relief because I’d been telling people that I was suffering for years and they hadn’t believed me.
“You start to question yourself about things. Just knowing takes a lot of the weight off you.
“Some days the pain is so much that it’s difficult to move around and all I want to do is lie down.
“It’s devastating when my daughter wants to play and I’m not up to it.
“Some dads get to put their children on their shoulders, but I’ve never got to do that.”
While Chiari Malformation Type 1 is most commonly diagnosed in adults, it is thought to often be present from birth.
Many people with Chiari malformation are asymptomatic and it is only found if they have an MRI scan, but Karl had symptoms from when he was a teenager.
He said getting a diagnosis was so difficult due to the lack of awareness around Chiari Malformation. Karl’s GP had never had another patient with the condition before him.
Karl, who also has epilepsy, has been assisted by The Brain Charity, a national charity supporting people with all forms of neurological condition, since last year.
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He said being able to talk to people at the charity, based in Liverpool city centre, helped him understand how fighting for a diagnosis had affected his life.
Karl is now supporting The Brain Charity’s #Sixmas appeal to raise £6,000 to support the 1 in 6 people with a neurological condition.
He said: “The Brain Charity helped me get a better understanding of what was going on with my condition.
“It has felt like so many people haven’t taken me seriously but The Brain Charity has.
“They didn’t pity me but tried to understand what I was going through.
“There needs to be a way to make doctors and people in general more aware of these rarer conditions because otherwise people just fall through the cracks.
“The Sixmas campaign will help for the charity to support more people like me, giving them the much needed information about their conditions.”
This year, The Brain Charity has faced a 70% surge in referrals due to Covid-19, despite many fundraising events being cancelled.
The organisation is asking people from all over the UK to organise and participate in a sponsored virtual or covid-safe activity event themed around the number six, to highlight the fact one in six people has a neurological condition.
Alternatively, you can pledge to donate just £6 a month to support The Brain Charity to provide practical help, emotional support and social activities for people with all forms of neurological condition.
Make a donation: www.thebraincharity.org.uk/sixmas
Sign up as a fundraiser: www.thebraincharity.org.uk/fundraise
Read more about #Sixmas: https://www.thebraincharity.org.uk/whats-on/sixmas-appeal
