This May, Rory and I are taking on a marathon challenge to raise vital funds for Cerebral Proliferative Angiopathy (CPA). This a rare and incurable brain condition that affects our family personally.

We’ve been given a really important opportunity to fund a £1,000 fellowship bursary for a medical student at Great Ormond Street Hospital. Their role would be to collate patient data for the Boston/London/Toronto consortium study, helping to bring together vital information that could move research forward in a meaningful way. Any funds above this continue directly to the CPA research foundation.

Wilbur is our son, and before this condition, he lived a completely normal, happy, and healthy life.

In Wilbur’s words is his story 💙

Hi! I’m Wilbur. I’m 9 years old 👋

I’ve recently been diagnosed with an AVM with overlapping features of CPA, and it’s all a bit strange to me... but I can tell you what it feels like.

💥 Because of CPA, I get what I call “The Wobbles” 💥

Most of the time, I look like any other kid you’d see at the park. But a Wobble is like a mini-stroke that happens when I least expect it. One minute I’m playing, and the next, my left side just stops working.

When a Wobble hits, it’s like my body forgets how to walk or stand. My arm and leg won’t do what they’re told, and I can’t stay on my feet by myself. I have to rely on my Mum and Dad until it passes, and it makes me feel really, really tired.

Even when I’m not having a full Wobble, my leg and foot aches every day, and I get bad headaches that make me stop and rest. I take some horrible-tasting medicine to try and stop the Wobbles, but it’s not really working yet. I hope it helps soon.

The Wobbles used to happen every few weeks, but now they happen all the time, and they last for hours. When my body finally starts working again, I feel exhausted like I’ve run a whole marathon without even moving.

The hardest part is that CPA it's like a secret. Some days I’m totally fine. But I never know when a Wobble is going to surprise me, so I’m not always safe to move around on my own and I am in pain.

I really hate the Wobbles because I can’t play rugby anymore. I miss it a lot. But I still go and cheer on my teammates at Orrel St James when I can, and I still watch Wigan Warriors with my Grandad. My family call me “Wilbur Warrior” and that makes me laugh.

I’m sharing my story because almost nobody has heard of CPA and at the moment there is no cure or medicine that helps me. It can be scary sometimes, but I’m doing my best to stay brave. Even when I’m wobbly... I’m still me 💪

We’re fundraising so more people understand CPA, more research can happen, and so families like ours don’t feel so alone

Every mile done is for Wilbur, and for every other child and family living with this condition

💙 Every donation makes a difference

💙 Every share helps raise awareness

www.cparfoundation.org

Thank you so much for supporting us🙏