The 35-year-old dad said his brain was slipping into his spine after “severe neck pain.”

Dad has been diagnosed with a debilitating illness, resulting in a brain slipping into the spine.

Carl Johnston, 35, has been suffering from severe neck pain, lightheadedness, fatigue and numbness in his arms since he was a teenager.

However, in 2016 he was finally diagnosed with the neurological disorder Chiari malformation type 1. Liverpool Echo reports.

That means he can’t fulfill his dream of putting his 9-year-old daughter Selenium on his shoulders. That is his only wish in 2021.

He was the first patient his GP saw in such a situation.

From dad Wallasey, Wirral, Currently, I am speaking out to raise awareness of Chiari malformation.

Karl said: “When I was finally diagnosed, many felt sorry for me, but it was because I was suffering for years and told people they didn’t believe me. I was relieved.

“You start to question yourself about things. Just knowing it can be quite a burden.

“One day, the pain was so great that it was difficult to move around, and all I wanted to do was lie down.

“It’s devastating when my daughter wants to play, but I can’t.

“Some dads carry their kids on their shoulders, but I don’t have to.”

Chiari malformation type 1 is most commonly diagnosed in adults, but is thought to be present from birth.

Many people with Chiari malformation are asymptomatic and can only be found on MRI scans, but Karl has been symptomatic since he was a teenager.

He said it was very difficult to get a diagnosis due to lack of awareness about Chiari malformation.

Karl, who also suffers from epilepsy, has been backed by Brain Charity, a national charity that supports people with all forms of neurological status since last year.

He said he could talk to people in a charity, Based in Liverpool city centre Helped him understand how the fight for diagnosis affected his life.

Karl is currently supporting The BrainCharity’s #Sixmas appeal to raise £ 6,000 to help one in six neurological conditions.

He states: “Brain charity helped me better understand what was happening in my condition.

“I felt like a lot of people didn’t take me seriously, but The Brain Charity does.

“They didn’t have mercy on me, but tried to understand what I was experiencing.

“We need a way to make doctors and the general public more aware of these rare conditions, because otherwise people will just get cracked.

“The Sixmas campaign helps charities support more people like me and provides us with the very necessary information about their condition.”

This year, Brain Charity faced a 70% surge in referrals by Covid-19, despite the cancellation of many fundraising events.

To highlight the fact that one in six people is in a neurological state, the organization organizes a number 6 themed sponsored virtual or covid-safe activity event for people across the UK. I am asking you to participate.

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