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Thousands raised to help man from Deal left with rare Locked-in Syndrome after brain stem stroke

Life was all about motorbikes for Jeff Brown until he suffered a catastrophic brain stem stroke leaving him with rare Locked-in Syndrome.

The 38-year-old from Deal is an avid follower of Moto GP, so much so that he once drove almost 1,500 miles to watch professional Valentino Rossi at his home race in Italy.

Motorbike mad Jeff Brown never misses a MotoGP race
Motorbike mad Jeff Brown never misses a MotoGP race

But now unable to move or communicate verbally due to paralysis of nearly all the voluntary muscles in the body, the former customs officer for Gerlach in Dover has discovered a bike of a different kind.

The Thera Trainer is a mobility training device helping Mr Brown rehabilitate as he continues on a journey to recovery.

Returning home to Deal after 10 months in hospitals, his family had worried about how they could afford the £7,000 piece of equipment.

But thanks to a Go Fund Me page launched last Thursday, friends, family and members of the community have rallied to donate more than double the amount required.

His wife of four years Sarah Brown, a senior team manager at a pharmaceutical company at Discovery Park in Sandwich, said: "Jeff was astounded to have met the target within a day and found it incredibly emotional to see the fund rising.

Jeff Brown falls into the 1% of people who are left with Locked-in Syndrome after suffering a stroke
Jeff Brown falls into the 1% of people who are left with Locked-in Syndrome after suffering a stroke
The couple started dating in February 2010 and married six years later
The couple started dating in February 2010 and married six years later

"We were, and continue to be, overwhelmed by the generosity and kindness of people."

She continued: "The first time Jeff used the Thera Trainer bike at QEQM was an emotional moment for us.

"He immensely enjoyed simply working his muscles and joints in that way.

"Most importantly, however, was the fact that the bike was able to show us that it detected resistance and activity from Jeff where he would try to join in.

"This was a revelation to us and it gave Jeff a focus and he would strive to keep gaining on the percentage of resistance it was detecting. This is something that Jeff is really looking forward to continuing at home and thanks to the fund we're currently looking at companies that are able to supply the bike with a view to order as soon as possible."

Jeff and Sarah Brown during a trip to Italy to watch the MotoGP
Jeff and Sarah Brown during a trip to Italy to watch the MotoGP

Mr Brown grew up in Eastry and attended Eastry Primary School and later Sandwich Technology School.

Despite a career in customs clearance, his family say his real passion lay in mechanics and motorcycling. He rented his own yard in Eastry where he would carry out car repairs for friends and has also attended courses to teach himself how to spray cars.

Mrs Brown said: "Jeff also absolutely loves riding his sportsbikes and never misses watching a MotoGP race.

"In September 2018 he drove us both down to Italy via Switzerland to watch Valentino Rossi at his home race.

"Whenever the weather permitted he'd be off for a 'blast' as he'd say, and he always relished the opportunity to take part in a track day at Lydden or Brands Hatch."

Sarah and Jeff Brown with their parents on their wedding day in 2016
Sarah and Jeff Brown with their parents on their wedding day in 2016

But life steered off track for Mr Brown and his loved ones on June 29, 2019 when he suffered a stroke while at his yard.

He was flown by air ambulance to Kings College Hospital in London and put onto life support, where he spent the next few months in intensive care.

Assessments and scans showed he had suffered a brain stem stroke and there was only a 1% chance that he would become 'locked in'. Unfortunately, Mr Brown fell into that small margin.

Mrs Brown said: "Naturally, we were devastated when we were delivered the news. We didn't really understand what it meant for Jeff.

"Luckily, when Jeff was repatriated to the Sandwich Bay ward at QEQM, we ended up meeting a bunch of wonderful people who have been an incredibly positive influence on Jeff and continue to be a part of his journey to this day.

Jeff Brown on his motorbike before the stroke in June 2019
Jeff Brown on his motorbike before the stroke in June 2019

"Often people don't realise that Jeff is cognitively unaffected and will talk over him which is incredibly frustrating for him.

"The team at QEQM always treated Jeff as the person he is, continually chatting to him and always gave him the opportunity to communicate his own thoughts and feelings.

"We have subsequently learnt that Jeff's stroke was caused by an underlying auto-immune disease called Antiphospholipid Syndrome."

When Covid-19 struck, it was deemed that patients that didn't medically need to be in hospital were sent home or to a safer environment.

A space for Mr Brown was found at a neuro rehab centre in Dartford but his family successfully pushed for him to be allowed home where he now receives help from carers four times a day in addition to care from family members.

Before the stroke, Jeff and Sarah enjoyed regular holidays including to Fuerteventura
Before the stroke, Jeff and Sarah enjoyed regular holidays including to Fuerteventura

Mrs Brown said: "Jeff was over the moon too as he'd been desperate to get home.

"Doing Jeff's meds, feed and care is now second nature and it feels like we've been able to create a new sense of normality for us.

"I've come to cherish the time I get to spend with Jeff where we can simply watch a film together and just enjoy each others company."

A positive mindset is what keeps the family upbeat.

Mrs Brown said: "Along with the bike detecting resistance activity from Jeff, he is also managing to activate muscles in his neck which we are following exercises for to build this up to eventually trigger postural and neck support.

Sarah and Jeff Brown with their parents on their wedding day in 2016
Sarah and Jeff Brown with their parents on their wedding day in 2016

"Jeff is becoming more and more expressive each day. He can move his eyes up and down (up for yes, down for no). It's easy now to tell when he is smiling and even when he is mad!

"He's trying hard to initiate his vocal chords and has some success with this which is becoming stronger.

"He laughs out loud often which is lovely to hear.

"He's also able to get a signal to some of his fingers at times and he practices every day to try and build on this."

His family has decided to keep the Go Fund Me page running for those who would like to offer their support.

Jeff Brown from Deal always relished the opportunity to take part in a track day at Lydden or Brands Hatch
Jeff Brown from Deal always relished the opportunity to take part in a track day at Lydden or Brands Hatch

It will help towards the couple's approved plans for an extension to create a more suitable long term living space, and other equipment.

Mrs Brown added: "The additional funding will be fantastic to go towards any equipment that can aid Jeff on his journey and we'd also like, when safe, to engage a physiotherapist to work with Jeff as much as possible.

"We would like to extend a heartfelt thank you to everyone who has shared and donated the funding page.

"We will always be so grateful as this is really going to help make such a difference to Jeff's life."

To donate, click here.

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