Lyndsey’s HSCT Treatment for Multiple Sclerosis

“The greatest glory in living lies not in never failing, but in rising every time we fall.” - Nelson Mandela

A best friend told me that if I told my story, people might want to help. So here it is laid bare:

In a nutshell…

• Girl travels to Malawi to volunteer

• Girl & boy fall in love (true love story) & get married

• Girl gets sick & has to come back to England

• Girl & boy have two beautiful children

• Girl wants to feel better & some clever, clever people in Mexico said they will help her

• Girl pleads with family, friends & strangers to help her raise £50,000 to give her true love story a happy ending. <3

If you have a little more time…

In September 2011 I travelled to Malawi, Africa to volunteer in a children’s centre for six and a half months. In Malawi I met and fell in love with my husband and we married in July 2012. I did not return to England after my volunteering had finished - I got a job in a local Primary school and we decided that we wanted to live our married life in Malawi and raise a family.

In April 2012 I started to have a range of short-term illnesses that seemed random to me. Eye problems, balance problems, neck/disc problems, pins and needles, and fatigue. My husband Derrick was not happy and decided that I needed to see a consultant. The consultant recommended an MRI. The MRI discovered activity suspicious of Multiple Sclerosis. Oh, how we laughed! We thought that these people had no idea what they were talking about.

At Christmas 2012 we flew to England and a neurologist looked at my scans and notes from Malawi and he carried out some strength-based exercises with me. He diagnosed me with Relapsing and Remitting Multiple Sclerosis. We weren’t laughing anymore. The bottom dropped out of our world. All our beautiful plans for the future were gone in an instant.

We returned to Malawi in January 2013 and the Malawian consultant confirmed what we already knew, that there was no help for me in Malawi, and I would have to return to England for support and treatment. Unfortunately, life is not always that straightforward - due to falling in love with a Malawian, we had some visa issues regarding returning to the UK, and would be stuck in Malawi for another year. I would not leave Derrick, Derrick would not leave me.

Eventually, I returned to England in January 2014 and Derrick followed me in February 2014. I was advised that I could start disease-modifying drugs, but we wanted to start a family so decided against starting medication. I found and visited the Kent MS therapy centre and started having; massage, acupuncture, and oxygen therapy to try to maintain my health and well-being. After a little practice, our beautiful sons Derrick Junior and Levi Paul were born in February 2020 and January 2022. Our beautiful family was complete!

Unfortunately, we started to realise Levi was not meeting his developmental milestones, and in April 2023 through a genetic test, it was confirmed that he has Down's syndrome. The bottom dropped out of our world again. At that moment, it hit home that at some point my MS might take over my life and that I would no longer be able to support my beautiful babies. Especially Levi, who will need a lot of support whilst growing up and may never be fully independent.

MS impacts my everyday life every single day. Tasks that many take for granted such as walking around the house or lifting my children, either consume my energy or simply aren’t feasible on some days. Someone my age should not need to use a mobility scooter or a chair lift. Aside from the physical symptoms, I also experience chronic fatigue, “brain fog”, and incontinence issues. When your three-year-old can see you struggling, and asks if you’re okay; that’s when you know something needs to change.

I have decided that the best hope for me is HSCT (Hematopoietic stem cell transplantation). Unfortunately, I do not meet the current criteria to get one via the NHS and cannot be involved in any trials. The cost of having one privately in the UK is currently around £90,000. So, I have made the decision that I want to travel to Mexico to a specialist clinic there for HSCT. The Clinica Ruiz in Mexico has been carrying out this type of treatment for 20 years and has outstanding results. The HSCT will cost around £50,000.

HSCT can halt my MS in it’s tracks, and potentially reverse some of the damage done by the disease. I wish for a life where I have the energy to look after my children and do more for the people around me who have been so incredible in my journey. I dream of walking in the woods with my family. I even dream of competing in the Mum’s race and my children’s sports day! HSCT can make my dreams become a reality.

So now another crazy chapter in my life begins; fundraising! In the coming weeks and months, we will be holding a variety of events to help push towards the target. They will all be advertised on here and on our social media pages. If you would like any further information or can offer support in any way, please do not hesitate to contact me.

Please, if you can, spare any pennies to try to help me get to Mexico and stop this horrible disease in its tracks. Any donations would mean the world to me, and will enable me to carry on living my happy ever after with my husband and our beautiful children!

Thank you for reading my story. <3