Rafe's story

16 Dec 2022, 2:58 p.m.

Rafe, 18, was diagnosed with a malignant high grade brain tumour when he was just four years old. Within five hours of his first MRI scan the family were referred to GOSH. Rafe shares his journey so far.

GOSH Patient Rafe and Bernard Bear

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.

Memories of GOSH

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.

Fundraising for GOSH Charity

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!

Life today

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.

Thank you to GOSH

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.

By supporting our Pioneer appeal this Christmas, you can help more children like Rafe. Thank you.