"For the first time in 25 years this means hope" - Leeds family fundraising for life-changing MS treatment

A Leeds family are desperately raising funds to help pay for a "life-changing" treatment that could halt the progression of Multiple Sclerosis.

Lisa and Jean-Christophe Verro with their two children Oliver, 7 and Charlotte 5, are fundraising for life-changing MS treatment. Photo provided by family.
Lisa and Jean-Christophe Verro with their two children Oliver, 7 and Charlotte 5, are fundraising for life-changing MS treatment. Photo provided by family.

Father-of-two Jean-Christophe Verro, 47, lives with MS - a condition that affects the brain and spinal cord.

There is no cure for MS and symptoms, which include vision problems, speech and swallowing difficulties and mobility problems, can develop and worsen steadily over time.

Sign up to our daily newsletter

Mr Verro, a former captain in the French Marines, was diagnosed with the condition in 1995 and following a relapse in 2015, he now uses a wheelchair.

He and his wife Lisa Verro, who live Moortown, now want to raise £55,000 for private Hematopoietic Stem Cell Therapy to try and stop symptoms progressing.

Explaining the illness, Mrs Verro, 45, said: "MS itself is not fatal - it is the side effects that go through your facilities one by one.

"He could lose his brain function, start having seizures, become bedridden or have trouble with swallowing.

"It's very unpredictable. There's no cure, no drug treatment.

"We can deal with it as it is now but if he starts to lose his functions it will be so difficult. His main concern is the brain shrinkage and I worry that if he loses his functions, say in his arms, he wont be able to drive or go out into the local community.

"This would devastate him as he is very independent and works full time.

She added: "When came out of hospital in 2015 the doctors said "why don't you give up work" but that's just not my husband.

"He tries to just get on with it. He tries to live as normally as possible. He likes his job and contributing to society, he doesn't want to be on benefits.

"He just wants to be like and do what every other dad does."

Mr and Mrs Vero, who are parents to seven-year-old Oliver and five-year-old Charlotte, first became aware of the HSCT treatment during a BBC Panaroma programme.

Since then they have come across various groups on Facebook with people who have successfully had the treatment.

According to the Multiple Sclerosis Trust, the number of people who are accepted for treatment on the NHS is extremely small.

Mr Verro did not meet the criteria for the limited NHS treatment and now the family are hoping to have the treatment abroad in May.

Mrs Verro said: "If he doesn't have it in May it could never happen. His condition is unpredictable so he could not be well enough.

"This treatment would be life-changing for us as a family.

"My son's bedroom is in the attic and he's always saying, 'I want my daddy to be able to play Lego with me in my bedroom or 'I just want to play football in the park with my daddy' but it isn't possible.

"The kids don't appreciate the seriousness of his condition and how it can progress - that's what we are thinking about with this treatment.

"We have two young children, we've got to try whatever we can to stop the progression.

"We appreciate that its a very large some of money to give but I hope the the local community can get behind us."

For Mr Verro, even the possibility of receiving the treatment has given him "hope" for the future.

The SEO manager said: "For the first time in 25 years this means hope.

"Since being diagnosed with MS in 1995, I have been through every step - there's no way out of it. No treatments, no cure.

"I've tried most treatments and they come with a lot of serious side effects.

"Apparently some clinics have been offering this treatment for 20 years. I just wish I had known about it three or five years ago.

"It just feels like hope after so long - like the windows and the shutters have been closed and now here is the chance to open them out wide and take a big deep breath of fresh air."

The family have already raised £3,000 of their target.

They have opened a Go Fund Me page and will be hosting a series of events in the community.

A Reindeer Dash has been organised in Roundhay Park involving a 5k or 2k run/walk, as well as a raffle.

it costs £15 per adult and £8 per child and guests will receive reindeer antlers, flashing red nose and mince pies in the entry fee.

It will take place on Saturday, December 14 at 10am and tickets can be purchased in advance here.