Rebecca’s Story

Multiple System Atrophy - MSA – 3 little letters that we wish we had never heard.  Where to begin, Rebecca was living her dream life after just becoming engaged to her long term partner Bern after 7 years together.  She was happy and settled in her life and didn’t wish for anything more.

She loved and took great pride in her job, working as a PA at a global tech company in the city of London.   Rebecca had a passion for live music and especially enjoyed attending festivals - Isle of White, Bestival and Glastonbury to name a few.  

 Unfortunately, this was all about to change.  Rebecca was just 43 years old when she was diagnosed with early onset Parkinson's in September 2019.  We later discovered that many MSA sufferer’s are incorrectly initially diagnosed with Parkinson's disease.

This news was devastating to Rebecca, her son Louis and us as her family.  However, after some research we were hopeful that Rebecca would still live a fulfilling life with the right support and medication.

Sadly, this was not the case for Rebecca as her health begun to deteriorate quite rapidly soon after her initial diagnosis.  As a family, we knew something wasn’t quite right.

Further tests and scans tragically confirmed that Rebecca did in fact have MSA, a degenerative condition for which there is no cause or cure.

 No one in our family had ever heard of this condition, and after researching the condition, were devastated to realise actually what this meant.  However, even then, we could never have imagined what this awful cruel disease had in store for Rebecca.  

Things escalated quickly for Rebecca who slowly lost the ability to walk, to eat, to talk, to sing and to even laugh.  

 We are approximately 3 years on from Rebeccas MSA diagnosis.  Rebecca requires 24 hour nursing care and is cared for by the amazing staff at Belmont Nursing Home.  Rebecca now communicates using a word board, which is very hard, frustrating and slow.  She is fed and medicated through a rig in her stomach because taking these orally are a choking hazard for Rebecca as she is slowly losing the ability to swallow and has been hospitalised 3 times with aspiration pneumonia.  Aspiration pneumonia is swelling in the lungs and airways and occurs when food / liquid is breathed into the airways / lungs instead of being swallowed.

As much as Rebeccas body is failing her, mentally she is completely aware of everything that is going on around her – shes just trapped inside her own body.

Of course, we still have great times with Rebecca.  She is still Rebecca, she is still the same person.  She still enjoys music, she enjoys playing bingo, she enjoys getting dressed up in her nice clothes like she always did.  But, there is no denying that this horrible disease has stolen the happy life that Rebecca led before.

We’ve had many battles along the way.  This disease is so rare and unheard of.  Many hospital staff and doctors that we have encountered during Rebeccas many stays in hospital have never come across this condition before.

As it stands, this is a terminal illness.  Life expectancy is 5-7 years after diagnosis. 

It means the world to us that Scott has chosen this charity and has chosen to RUN FOR REBECCA 💜

https://www.msatrust.org.uk