Anita Cunningham, from Billericay, was a childhood carer for her mum Linda, who had a rare form of multiple sclerosis.

Her mum sadly passed away at the age of 49 and Anita, now 41, thought she had put her past behind her.

Devastatingly, her husband, Tony, was diagnosed with primary progressive MS, the same degenerative condition as Linda, last year.

Tony’s brother Gary is aiming to raise £4,000 by doing a gruelling 200km cycle ride in June around south and north Essex to raise money for Tony to have stem cell treatment in Russia next year.

To donate, visit Here, Anita talks to LOUISE HOWESON about the pain of seeing two loved ones affected by this rare disease.

Anita says: "Coming to terms with the fact my husband has the same disease that took my mum has been a hard journey for the last 14 months.

Seeing someone you love deteriorate is not easy, especially when you have been through it all before.

I was 11 when I started to care for my mum. She was diagnosed with primary progressive MS at 33 and within five years she was in a wheelchair.

My dad worked nights, so I would need to care for her and get her to bed each evening.

At that time I didn’t have any hoists to help lift her, so I would have to get behind her and lift her by the armpits and basically drag her up the stairs. It must have been so hard for her to see her little girl have to do this.

I didn’t really tell anyone what was happening at home. I just wanted to switch off when I was with my friends.

I met Tony when I was 13, at Greensward School in Hockley. There was instant chemistry.

We had the exact same sense of humour and were the practical jokers of the group.

I loved being with him and he helped me through those times without really knowing about it.

My mum died at 49 and the whole experience changed me as a person. It made me value every minute and the people around me.

Me and Tony lost touch after school, but we reconnected later in life, fell in love and have been together ever since.

We still share that same sense of humour and have never stopped having fun together.

He worked as a chef and was very talented and we have been very happy together.

Then he started to trip over his feet when he was walking.

Initially he thought it was just him being clumsy, but it started to get worse, so he went to the GP and they immediately referred him to a neurologist.

He was diagnosed with primary progressive MS, a rare form of the disease which affects just 10-15 per cent of people with MS.

I was in shock that Tony had the same disease my mumhad and that I was going to go through the same thing again.

It was a shock and then there was the realisation that our hopes and dreams might be in jeopardy.

The reason I have remained strong and positive has been because of Tony. It is hard to be upset all of the time when you are living with someone who is so positive and happy.

I’ve never once heard him say “whyme?”, he just accepts the situation and makes the best of it.

I do worry about whether I am strong enough to go through all that again. But I know I will be strong enough and we will always be together.

We still laugh together – he has such a wicked sense of humour and a big heart.

I knowTony worries about me not living out my dreams and I worry about him. We worry about each other and support each other – that’s how we cope.

It must be hard for him to be 41 and have to have his dinner cut up for him and to struggle to walk to the shops, but he never complains.

There is no treatment for primary progressive MS available in the UK, but we hope there is light at the end of the tunnel in the form of hematopoietic stem cell transplant.

Tony is on the waiting list to have the treatment at the National Pirogov Medical Surgical Centre in Moscow. It will cost £40,000 and we are currently raising funds to get him there.

He will fly out to Russia to have the treatment in October 2016. All of our focus is now on the treatment now. I wish I could fall asleep and wake up and it be October and Tony was going in for his treatment.

We have been overwhelmed by the support of people. One little boy saved up all his pennies and donated them to the charity, and a lady at Christmas time got in touch to say she was a single mum and didn’t have a lot to give, but she had heard about Tony and wanted to donate £5.

We decided to tie the knot in Australia last year. Tony had paid for a holiday before his diagnosis and then one of my friends in Australia suggested we get married while we were there. She organises weddings and she helped plan everything and all the people involved donated their time for free.

We got married on a beach in Queensland. It was the most magical day. It was amazing to see him walking along the beach on our wedding day. One day he might not be able to do that, but we cherish the moments. When you are looking after someone, you become even closer, I think.

I see him when he is at his most tired and when his symptoms are at their worst.

We will visit friends for dinner and they will see him and think he can walk OK, but compared to 14 months ago I can see his symptoms have got worse.

He was an excellent chef and it was a job he loved, but he has accepted he had to stop working. It must be hard to go from being an active man to being at home most of the time.

Not that you would ever hear Tony complain. The way he has dealt with his diagnosis has been amazing and he is true inspiration to me and the people who know him.”


“I was worried about Anita when I got the diagnosis”

WHEN Tony was diagnosed last year, his first thoughts were for his wife Anita.

Tony, who is 41, says: “When I got the diagnosis, one of my first thoughts was that I didn’t want her to go through all that again.”

The former chef struggles with extreme fatigue and a loss of bodily functions down his right side.

He says: “My symptoms are down my right side, so it is good I am left-handed. I have a nap during the day for half an hour and it resets me.”

Now Tony is focused on staying positive about his upcoming treatment.

He says: “My friend contacted me about a documentary on an Australian woman who had gone to Russia for the treatment. I researched it and managed to get my name down on a two-year waiting list for October 2016.

“I am hoping after treatment my balance will be better so I can do things like cycling again. It definitely makes me more positive knowing I am going to have the treatment in the future.

“I am fundraising is to raise money to have the treatment, but I also want to raise awareness about the treatment and to lobby for it to be available on the NHS.”


Brother takes on 200km cycling challenge to raise funds

BROTHERLY love has spurred Gary Cunningham to saddle up to raise money for his brother’s stem cell treatment in Russia.

He says: “We are extremely close and I actually moved back to Billericay from Scotland three years ago so I could be closer to him,” says Gary, who lives with wife Kristy and their three children.

Tony is on the waiting list to have the treatment at the National Pirogov Medical Surgical Centre in Moscow in October 2016.

It will cost £40,000 and Tony, his brother Gary and friends and family are currently raising funds to get his treatment.

Gary, 35, is gearing up for a mammoth cycle ride in June.

He says: “We are starting off at the Chequers Pub in Billericay and going along the country lanes to Ingatestone, Writtle, Purleigh, Great Leighs, Maldon and West Hanningfield.

“It is a 100km and we are doing it twice.

“Tony got really into cycling before his diagnosis, so it seemed apt to make the fundraiser a cycling event to celebrate something he loves and will hopefully do again after he has the treatment.”

So far almost £9,000 has been raised and they have series of events lined up in the future.


What is the treatment?

HEMATOPOIETIC stem cells (HSCs) are a type of adult stem cell made in the bone marrow that have the ability to produce the different cells found in blood, including immune cells.

Hematopoietic stem cell transplantation involves taking a person’s own HSCs from their bone marrow or blood, and then wiping-out the white blood cells using chemotherapy.

The HSCs are then given back in an effort to help “reset” the immune system so it stops attacking and damaging the protective myelin coating surrounding nerves.


MS Society viewpoint

THE Multiple Sclerosis Society does not advocate hematopoietic stem cell transplantation until there are further clinical trials.

Dr Sorrel Bickley, research communications manager at the MS Society, said: “While stem cells have the potential to help treat many different conditions, including MS, there is currently not enough known about the safety and effectiveness of treatments like haematopoietic stem cell transplantation.

“We would encourage people with MS to talk to a specialist healthcare professional before undergoing any form of unproven treatment.”