I am running the 2026 London Marathon in loving memory of my beautiful Mum and to raise awareness of Cerebral Amyloid Angiopathy (CAA) and money for The National Brain Appeal who are a charity very close to my heart.

The National Brain Appeal supports research for Cerebral Amyloid Angiopathy (CAA) by funding pioneering research at the UCL Queen Square Institute of Neurology and supporting specialist care at the National Hospital for Neurology & Neurosurgery, known collectively as Queen Square.

My Story:

My Mum unfortunately suffered a brain haemorrhage in 2014 aged just 48 and had to undergo emergency life saving brain surgery which resulted in half of her skull needing to be removed in order to relieve the pressure on her brain. After spending a short time in intensive care and to Dr’s amazement my Mum made a remarkable recovery. As this bleed happened on the right side of my Mums brain this affected the left side of her body including her vision and weakness in her left arm. Following surgery my Mum was required to wear a protective helmet for 13 months until she had follow up brain surgery in 2015 to fit a titanium plate. MRI scans throughout this time also showed microbleeds however there was no definitive diagnosis for the cause of my Mums stroke.

In 2018 my Mum unfortunately suffered a frontal lobe hemorrhagic stroke which this time happened on the left side of her brain. We were faced to make a quick decision with no certainty on how my Mum would recover. We clung onto hope and after spending nearly 2 weeks in intensive care it was clear as the weeks went on we realised the damage caused from this stroke was more than we could ever have imagined and devastatingly affected my Mums speech, mobility and cognitive function. My Mum’s life changed overnight and she spent the first 8 months in hospital and in that time had 3 further bleeds on the brain. My Mum was declined Neuro rehabilitation from several units until she was invited to UCLH for an assessment. Thankfully my Mum was accepted into the amazing Queens Square Neuro-rehabilitation Unit where she spent a further 5 months recovering. My Mum worked so hard and with an amazing specialist team of Dr's, Nurses, physio therapists, occupational therapists, and speech and language therapist to help her achieve her goals and to come a lot further on in her recovery. After a total of 13 months in hospital my Mum remained wheelchair bound and required 24 hours care however with the incredible support of Queens Square, adaptions being made to our home and specialist equipment provided my Mum was able to return home in 2019 with a package care that is so rarely given to families. I will be forever thankful to the team at Queens Square who supported my Mum and us as a family as this allowed us to take care of my Mum in her home and with support. This allowed us to spend precious time and create so many special memory’s with my Mum in her final years.

After my Mum’s second stroke she was left with Aphasia. Music was so powerful as she was able to sing along to songs however she was only able to communicate with limited speech and ‘Looking back before then’ became the only words my Mum really spoke. For our family this was our new language and we was able to translate what this meant. Somedays were more difficult and we had to communicate with closed questions as my Mum was able to respond with yes/no. I can only imagine how frustrating this must have been for my Mum because she knew exactly what she wanted to say however was unable to express it. No matter how long it took us we always made sure that we understood what my Mum was trying to say.

Following my Mum’s first stroke she was sure this had a genetic link as her Dad sadly passed away at aged 49 with a brain haemorrhage and having drawn out our family tree there were 7 other relatives who also suffered a stroke and therefore my Mum was committed to getting to the bottom of the cause. My Mum remained under the care of UCLH since 2014 and in 2022 the specialist team at Queen's Square were able to complete full genetic genome testing which confirmed that my Mum unfortunately inherited a rare faulty gene (APP duplication gene) which is the cause for Cerebral Amyloid Angiopathy (CAA) a degenerative brain disease which causes bleeding in the brain, seizures and Alzheimer’s disease. Whilst the result was soul shattering my Mum got to the cause in her lifetime. In June 2024 my Mum sadly began to deteriorate and in October 2024 her neurologist suspected that her condition was progressing and involved Palliative care. My Mum peacefully passed away at home surrounded by her family on 15th November 2024 aged 58. Currently there is no known effective treatment for CAA however my Mum gave important insight into research which will support Queens Square and me, my brother and sister as we now have a 50% chance of inheriting this condition.

I was often referred to as a my Mums carer but I was just a daughter taking care of her Mum and there is nothing I wouldn’t have done. Advocating for my Mum, making decisions in my Mums best interest and making sure that my Mum had the best quality of life possible under the circumstances and most importantly was happy is what mattered most. Watching my Mum deteriorate from such a cruel disease over 10 years and 7 months was beyond heartbreaking. Seeing my Mum so poorly in her final months was so very difficult. My Mum went through so so much. It was unfair and not the life that my precious Mum deserved. To my strong, brave, beautiful, inspirational, superwoman Mum it was a privilege to be your daughter and I will forever honour you and hold you in my heart. Your unconditional love and strength will carry me through the rest of these hard days until we meet again. Our mother and daughter bond was like no other, a depth of love I can never ever explain. I know you will be with me through every step and every mile of this challenge and throughout the rest of my life ❤️

Thank you so much for taking the time to read my page. No matter how small your donation it will help The National Brain Appeal to continue funding important research into CAA and to improve the outcome and quality of life for individuals affected. Thank you in advance for any kind donations it truly means so much Xx