Raise life changing treatment for Becki's MS

Hello! I'm fundraising for a life changing treatment for my younger sister who was diagnosed with highly active Multiple Sclerosis (MS) in the Summer of 2019, aged only 25. 

My sister is the best mum and step-mum to my hilarious, amazing three nieces, and I am fundraising for her to access a new life changing treatment to enjoy a full, healthy and long life by my side as both my sister and best friend.


Goal

Initially we aimed for £500 in order for a consultation with a specialist. We smashed this, and Becki has an initial appointment. We expect the treatment to likely to be close to £90,000 in the UK, but will adjust the goal once exact  price is comfirmed. This is a cost which is impossible for us to save without help. There may be cheaper options abroad, but there will be travel costs, restrictions, and risks due to covid-19 to consider. We will update the page each step of the way.

 

Becki's Story

As a mum to young children, Becki didn't really notice that fatigue had become a part of her life. She started feeling really dizzy, and one day suddenly realised she had blind spots in her vision. This was scary, but we really began to worry that something was seriously wrong when Becki went to pick up her 7 month old daughter and dropped her. A few days later Becki lost sight completely in one eye. She had no coordination, couldn't drive, walk in a straight line, couldn't see properly, and felt exhausted. After being dismissed as just having vertigo in A&E, an optician noticed swelling in the optic nerve and sent for an MRI.

I will never forget accompanying my baby sister to an urgent Neurology appointment where the Dr had stayed past clinic hours to see us, to hold Becki's hand as we were told that the MRI highlighted several lesions on the brain, and that this was Multiple Sclerosis. The neurologist was surprised Becki hadn't complained of major symptoms before because some lesions were quite old. It turns out she'd had MS for some time, and hadn't realised.

Steroid treatment sped up this particular relapse and within a month or two Becki had her vision back and was a bit more steady on her feet. However, in the December of 2019 Becki had a major relapse which hit suddenly and scarily. One morning Becki woke up with severe new symptoms which left her bedbound. Vertigo struck so severely she couldn't lift her head, she couldn't open her eyes, walk, and she had bladder retention. Becki was hospitalised for 3 weeks and nearly missed Christmas with her family. She slowly learned to walk again, unsteadily, with a stick, and returned (somehow) to her first floor flat, just in time for Christmas with her young family.

At this point Becki decided to give up university where she had been studying to be a nurse, and juggling placement, studying, and mum life. Becki has been INCREDIBLY lucky to have recovered well from this attack - she no longer uses a stick, and although her balance and coordination isn't the best, she is well enough to drive and works part time in admin. In 2020 Becki started a treatment which has largely kept major relapses at bay, however there have been new lesions and some new symptoms since, and there have been fears her current treatment isn't working.

The unpredictable nature of MS means Becki could relapse at any time and the disability will be irreprable. At only 27 years old, Becki hopes this treatment will enable her to maintain or even improve her current level of disability for the rest of her life, and potentially extend her life expectancy. Her girls are brave little cookies who worry about their mama and deserve to have her rolling about on the floor playing with them for many years to come. 

 

About MS

MS is a lifelong condition that affects the brain and spinal cord, causing a wide range of potential symptoms in just about anything; including problems with vision, movement, speech and memory. Relapses occur without warning and can leave permanent disability, with relapses becoming more frequent over time and disability progressing. Life expectancy is reduced with MS. There is no cure, but a pioneering stem cell treatment can stop MS in it's tracks while Becki is young, and prevent it from progressing any further. The treatment is expensive and is rarely funded on the NHS.

More info - www.nhs.uk/conditions/multiple-sclerosis

Becki has been diagnosed with highly active relapsing remitting MS. She currently has been scored a 2.5 on the Expanded Disability Status Scale (EDSS) and this life changing treatment should prevent her crawling any further up the scale. More info about the stages on the scale, and what it does and doesn't measure, are here; www.mssociety.org.uk/about-ms/treatments-and-therapies/getting-treatment-for-ms/expanded-disability-status-scale 


About the Treatment

There's no cure for MS; Becki currently has monthly infusions of a Disease Modifying Treatment (DMT) which aims to slow the progression of the illness for as long as possible. However, we are looking for Becki to access a pioneering new stem cell treatment that can stop MS in it's tracks and prevent further deterioration and disability. There's no fixing the damage already done to her brain and spine, but stem cell therapy creates a whole new immune system which stops any new lesions occuring at all. Additionally, in some cases also improves symptoms such as fatigue which can further improve quality of life.

Haematopoietic stem cell transplantation (HSCT) is an intense chemotherapy treatment for MS. It aims to stop the damage MS causes by wiping out and then regrowing your immune system, using your stem cells. Becki would be an ideal candidate, with the disease being both aggressive and in it's earlier stages. More info about HSCT can be found here - www.mssociety.org.uk/about-ms/treatments-and-therapies/disease-modifying-therapies/hsct


How You Can Help
Thank you for any donation, big or small. Please also consider raising funds yourself by starting a fundraising challenge such as a sponsored walk, silence, skydive etc. The money you raise is SO appreciated by Becki and her loved ones who benefit from her health! ♡

  • Deborah White 
    • £10 
    • 17 hrs
  • Tom Hooke 
    • £20 (Offline)
    • 2 d
  • Lucie Nicholas 
    • £10 
    • 3 d
  • William Knox-Walker 
    • £10 
    • 15 d
  • yasutaka tanaka 
    • £10 
    • 22 d
See all

Fundraising team (2)

Natasha Dillow 
Organizer
Raised £1,480 from 47 donations
Southend-on-Sea, UK
Becki Dillow 
Team member
Raised £1,165 from 29 donations
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