Rafe's story

The only symptom I had initially was some vomiting in the morning, which had been happening for the previous three months. Then one afternoon, our lives were turned upside down when I was diagnosed with a malignant brain tumour.

That evening, I was admitted to Great Ormond Street Hospital (GOSH), and over the next 18 months I underwent six hours of brain surgery, had 33 rounds of radiotherapy under general anaesthetic and 15 months of chemotherapy.

I completed my cancer treatment in January 2010, but that wasn’t the end. I remain under six different specialities, I’ve had many operations on my eyes, and have a lot of medication due to the long-term effects of the treatment. I had to learn to walk again, with lots of physio, and I have left-sided weaknesses, which have improved after a long period of time.

The first thing I remember when coming out of brain surgery was my reception schoolteacher being there with a massive toy fire engine with a remote control. I couldn’t walk at all, so she would guide me with it.

There has never been one appointment that I haven’t wanted to go to at GOSH! It feels like we are part of a large family, as we’ve met so many staff over the years who were supportive during my visits. I particularly remember Mary, who was a volunteer in the Chaplaincy team, as well as Jim the Chaplain.

GOSH has become a massive part of my life and I am passionate about raising money for Great Ormond Street Hospital Children’s Charity (GOSH Charity). The very first thing I did was a plant sale. It started off very small – I raised £9.50! But Helen, a lady who worked on the fundraising desk at the time, was so grateful and enthusiastic that it made me want to do more. So, I got a cheque out and wrote a big number on it as a goal, and that’s when it all kicked off.

Now I grow vegetables with my 75-year-old neighbour, Ronnie. We grow all sorts, from tomatoes to cucumbers. I’ve done it for quite a few years, and my mum and dad have even become my delivery drivers! We work as a team – I do all the orders and they go and deliver them. There was one very generous couple who gave me £500 just for a few plants! Fundraising for GOSH Charity is hugely important to me, as I’ve had so many MRI scans over the years, and I know this equipment costs a lot. I want to help give back. It’s reassuring to know that the money I’ve raised is helping other children to get the support I had. I’ve raised over £20,000 in total, and I’m not going to give it up!

Aside from fundraising, I love my animals. I have a chicken and a rabbit, and I’m an uncle to my brother’s cat. I love to cook, and my chicken lays an egg for me every day! We also belong to a sailing club, which I really love, and they asked if I would do the raffle this year and organise the prizes.

I have a placement working in a hospital and I’m hopefully going to be working in a pharmacy soon. I’m really interested in working with children, and I’ve completed courses in childcare and health and social care. With this illness I’ve realised that life is precious, so I should grab it every day.

Right now, I’m in the process of transitioning into adult care. It’s been very backwards and forwards, so I don’t think we quite realised it was the final visit at GOSH until we got there, which was probably a good thing. We hadn’t realised because for us, GOSH is part of our lives, part of our family. And I know that the doors are always open.

I am very proud and forever grateful to GOSH. If it wasn’t for the hospital and all the amazing work the staff do, I know that I wouldn’t be here now or be the person I am today. That’s the reality. From the doctors and nurses who have been there from the very start to those who have visited me on the wards, I’d like to say a massive thank you to them all.

To other children just starting on their journey at GOSH, I want to say that it may seem like a big, scary place, but it’s not. It’s a friendly, homely place, and the staff there are like a second family to me. I know GOSH’s motto is that every child matters. And from my experience that motto is totally lived out.