My Journey with Cavernoma

On a seemingly ordinary Monday morning, I arrived at work, only to realize that something wasn’t right. I had a headache, my vision was blurred, and my cognitive reactions were slow and confused. It was the beginning of something that would change my life.

Soon, I was taken home, luckily to my parents' house. But by then, I had lost my short-term memory. I couldn’t recall being at work or even dropping my children off at school and nursery. My parents made sure the kids were safe, and then took me straight to A&E. On the way there, I experienced hallucinations and then suffered a major seizure, and was blue lighted to the hospital.

Hours later, I woke up in A&E, where I was told I had undergone a brain scan, and a vascular malformation had been found in my Occipital lobe. I was admitted for further tests, and prescribed anti-epileptic medication, which I’d need to take indefinitely.

Three days later, I was discharged with the shocking news that I’d had a brain haemorrhage. The only thing I had was an appointment for an MRI in six weeks. It was an incredibly lonely and terrifying time. I was convinced I didn’t have much time left with my children, and I didn’t know where to turn for support..... That’s when Cavernoma Alliance UK (CAUK) stepped in.

From my very first contact, they provided not just practical information but the emotional support I desperately needed. They connected me with a Caverbuddy—a person who had lived through exactly what I was going through—and who could share their experience and guidance with me.

Whenever I felt desperate, I would call their helpline. They gave me time to unload, to share my fears and frustrations while I was trying to hold it all together for my children & family, all while struggling so much with my diagnosis.

Fast forward to 2025, and I’m thrilled to share that after years of managing epilepsy and other symptoms from my cavernoma, I chose to undergo brain surgery to remove the lesion. It was the best decision I’ve ever made.

I couldn’t have gotten through my diagnosis, illness, surgery or recovery without the unwavering support of CAUK. The services they offer are invaluable, and I will forever be grateful for the lifeline they provided when I needed it most.

So how do I give back to this incredible charity? Well..... In April 2024, I began volunteering for CAUK and in December 2024 I was appointed as the new Member Support Assistant, working 7 hours a week.

But I’m not stopping there - Me, my husband Tom, my sister Katie & my brother in law Ryan, plus our 4 kids (ages from 9 to 14 years old), are participating in CAUK’s 2025 fundraiser. We’ll be climbing Mount Snowden on Saturday 7th June, just two weeks after my two-year brain surgery anniversary.

This charity means the world to me, and I would be over the moon if you could help me raise vital funds to support their essential work—whether in finding a cure for Cavernoma or continuing to offer life-changing support to the thousands of members like me.

Without donations and fundraising, charities like CAUK cannot continue their invaluable work. Please, if you can help in any way, it would mean everything. And if you could also share my fundraiser I would be so grateful. Thank you from the bottom of my heart.