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Folkestone mum with MS fighting to raise £50k for life-changing treatment in Mexico

A mum who needs life-changing treatment after being diagnosed with multiple sclerosis (MS) hopes one day she will be well enough to pick up her children without being in pain.

Lyndsey Dilla, from Folkestone, has been battling the condition for the past 11 years. It has now progressed to the point where she struggles to carry out daily tasks such as the school run without experiencing discomfort and extreme fatigue.

She is now trying to raise a staggering £50,000 for “life-changing and life-saving” stem cell therapy in Mexico to “reset” her immune system.

The 42-year-old told KentOnline: “I have had many jobs over the years - but being a mum is my favourite job.

“I want to be in the mums’ race at school and I want to be able to make a fool of myself when I fall over.

“It’s my dream, which I know is ridiculous, but it’s all I want.”

The mum-of-two, who grew up in the town and went to the former Pent Valley school in Cheriton, first found out she had MS while living in Malawi.

Lyndsey Dilla, from Folkestone, with her husband Derrick and sons Levi and Derrick Junior. Picture: Lyndsey Dilla
Lyndsey Dilla, from Folkestone, with her husband Derrick and sons Levi and Derrick Junior. Picture: Lyndsey Dilla

She moved there in 2011 to volunteer at a children’s charity and during her time there she met and fell in love with her now-husband Derrick.

The couple had planned to stay in Malawi and start a family, but Mrs Dilla’s health meant they had to face challenges they never could have expected.

Mrs Dilla explained: “In April 2012 I started having dizzy turns but I just got on with things. I didn't really think anything of it

“I thought it might be the heat exacerbating stuff.

“If I went to Zumba with the other volunteers, I would get pins and needles in my legs.

Lyndsey Dilla pictured with her family on Sandgate seafront. Picture: Lyndsey Dilla
Lyndsey Dilla pictured with her family on Sandgate seafront. Picture: Lyndsey Dilla

“One day when I got out of bed I started falling over and then I had an eye problem.

“That’s when Derrick said we need to get some help. So he took me to see a consultant who carried out an MRI.

“I thought it would be a huge waste of money but turns out it wasn’t.

“It picked up that I might have MS as there were lesions on my brain.

“I laughed because I thought they didn’t know what they were talking about.”

Lyndsey Dilla shaved her head to raise money for life-changing MS treatment in Mexico
Lyndsey Dilla shaved her head to raise money for life-changing MS treatment in Mexico

After returning to England for further tests at The Chaucer Hospital in Canterbury, a neurologist eventually diagnosed Mrs Dilla with relapsing and remitting MS, which sent her world crashing down.

The disease has since changed to secondary progressive MS - which means her disability will steadily get worse.

Consultants in Malawi confirmed resources in their country were limited and that Mrs Dilla would have to move back to England to get the support and treatment she needed.

She returned to Folkestone in January 2014 where she was advised to start disease-modifying drugs.

But, desperate to start a family, Mrs Dilla decided not to take them.

“My husband thinks I’m crazy that I want to get this treatment to do more housework…”

Instead, she began massage therapy, acupuncture, and oxygen therapy to try to maintain her health and well-being at the Kent MS Therapy Centre, something she says has been a lifeline for her.

Then in February 2020, Derrick Junior, four, was born and Levi Paul, two, followed in January 2022, completing their family.

Now, more than anything, Mrs Dilla says she wants her health to improve so she can do more for her children.

“I just want to get up and show up for my children, I want to be able to do the school run,” she explained.

“I want to do all the jobs people grumble about like the washing.

Lyndsey Dilla says Hematopoietic Stem Cell Transplantation treatment will be "life-changing"
Lyndsey Dilla says Hematopoietic Stem Cell Transplantation treatment will be "life-changing"

“I want to go back to work and go to the gym. My husband thinks I’m crazy that I want to get this treatment to do more housework.

“Now, when I get up in the morning I’m in pain and trying to get the kids ready for nursery sucks all the energy out of me.”

As a result, Mrs Dilla has opted to have Hematopoietic Stem Cell Transplantation (HSCT) at a specialist clinic in Mexico - but first she needs to raise £50,000.

According to the MS Society, HSCT aims to 'reset' the immune system to stop it from attacking the central nervous system.

It uses chemotherapy and rebuilds the immune system using a type of stem cell found in bone marrow.

While the treatment is available on the NHS, Mrs Dilla has been told she is not eligible as she has not taken the suggested medication and her diagnosis was too long ago.

If she were to go private in the UK, she says the treatment could then cost between £80,000 and £100,000.

She said: “My decline is speeding up now. I have to use a walker and that is why this treatment is so important.

“It could be life-changing and life-saving.

“I feel this is the only path for me because going to the Kent MS Centre and seeing so many people on the drugs, some of them are no better off than me.

“I have done so much research into this and when it works, the HSCT stops the progression of MS whereas the drugs only slow it down.

“I have spoken to people who have had this treatment and they are doing so well.

“There is no guarantee how it will work for me but I have been told more than 75% to 80% of people have seen positive improvements over three years.

“One person I know had debilitating migraines every day and now he doesn't have them.”

Friends and family helped Mrs Dilla set up a GoFundMe page.

Not only will the £50,000 fund the treatment, but it will also pay for carers to look after her during her time in Mexico, accommodation and any medication she needs while out there.

So far she has raised more than £10,200 through a variety of activities such as shaving her head, hoy bingo and quiz nights and raffles.

Once she has raised enough money, Mrs Dilla can book her trip to Mexico where she will stay for 28 days while receiving treatment.

Mrs Dilla is also hoping to organise a music festival in Folkestone this summer to continue raising funds and has donation boxes collecting change scattered around the town.

MS is one of the most common causes of disability in younger adults, according to the NHS.

It can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance.

The MS Society says more than 130,000 people in the UK have the condition, and that almost 7,000 people are newly diagnosed each year.

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