Lyndsey Dilla, from Kent, has been battling multiple sclerosis for 11 years and hopes to have life-changing stem cell therapy in Mexico to “reset” her immune system
A mum with MS is fundraising for a £50K operation – so she can fulfil her parenting “dream”.
Lyndsey Dilla has been battling multiple sclerosis for the past 11 years, with the condition making her unable to do daily tasks such as the school run without experiencing discomfort and extreme fatigue. She is now trying to raise money for “life-changing and life-saving” stem cell therapy in Mexico to “reset” her immune system.
The 42-year-old from Folkestone, Kent, said: “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.”
MS is one of the most common causes of disability in younger adults, according to the NHS, and 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 mum-of-two first found out she had MS while living in Malawi, where she was volunteering for a children’s charity – and where she met 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. She 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.”
“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.”
Mrs Dilla was diagnosed with relapsing and remitting MS which has since become 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.
Instead of taking disease modifying drugs, she began massage therapy, acupuncture, and oxygen therapy-through determination to start a family. The couple had Derrick Junior, four, and Levi Paul, two, which encouraged Mrs Dilla to improve her health so she can do more for her children.
She said: “I just want to get up and show up for my children, I want to be able to do the school run. I want to do all the jobs people grumble about like the washing. 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.” She added: “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 per cent to 80 per cent 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 to raise the money needed, which 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 £10,500 through a variety of activities such as shaving her head, hoy bingo and quiz nights and raffles. She 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. Once she has raised enough money, Mrs Dilla can book her trip to Mexico where she will stay for 28 days while receiving treatment.
Visit her GoFundMe here.
