Rugby family’s battle to pay for Rob’s motor neurone disease care

Close family: Rob's eldest son Samuel got married at the foot of his father's bed last month
Close family: Rob's eldest son Samuel got married at the foot of his father's bed last month
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The family of a Rugby man battling with motor neurone disease are raising money to help cover the cost of his care in France.

Rob Johnson, 49, developed MND after he moved across the Channel with his family for work. He spent months renovating their former holiday home and put his aches and pains down to the manual labour.

But several years later, Rob, a former governor at Lawrence Sheriff School, was diagnosed with the muscle-wasting disease, and he is now unable to move.

His wife Mandy, 48, is his full-time carer and looks after him at their home.

Rob, a former sales director at Vartec, can communicate only by blinking.

He helped raise more than £130,000 during his time at Vartec for the company-wide charity - the Motor Neurone Disease Association.

Mandy, former admin assistant at St Marie’s Catholic Infant School in Rugby, said: “We have set up a mini hospital in the sitting room so that Rob is in the middle of the family and not shut away in a bedroom.

“He would much prefer to be the one giving help rather than receiving it. His sense of humour and strength of character is getting him through his difficult time.”

The dad of four is attached to a life support machine 
and is unable to speak due 
to a tracheotomy.

He communicates by blinking when his family point to letters on a whiteboard.

Mandy said: “We have a spare ventilator to cover any breakdowns, an oxygen machine, a suction machine, boxes of supplies, medicines, food packs and spare oxygen cylinders.

“Rob needs aspiration many times during the day and night. On a good day it can be ten times, on a bad day it can be every ten minutes.”

The couple’s eldest son Samuel got married at the foot of Rob’s bed last month.

In their town, couples must have a civil ceremony conducted at the town hall by the mayor. After some negotiation, the mayor agreed to perform the ceremony at their home.

Mandy said: “It was so wonderful that Rob was able to be with us, it really was unthinkable for us to do it without him.”

The family, who used to live in Wood Street and Clifton Road, pay a carer to assist Rob for one hour in the morning and evening.

They have four children, Samuel, 24, Sophie 22, Benjamin, 18, and Alexander, 16.

Mandy’s mother, Stella FitzPatrick, has been raising money for ‘Rob’s Fund’ in Rugby by hosting garden parties and selling items from the former Help the Aged UK shop in Church Street.

Stella said: “The healthcare system is different in France so they have to pay for a lot of medication themselves.

“Thank you is weak in comparison to peoples’ generosity, I wish there were more words. They have been amazing.”

Rugby Rokeby Lions Club recently donated £500 to Rob’s Fund.

To donate to Rob’s Fund, visit Stella in the former Helped the Aged UK shop in Church Street, Rugby, between 10am and 4.30pm.