Living With An Craniopharyngioma

Ray Rice was diagnosed with a low grade (benign) brain tumour in 1998

Ray Rice was diagnosed with a low grade (non-cancerous) Craniopharyngioma in 1998. He was just 12 years old when he was told he would need brain surgery to remove this type of brain tumour.

The surgery helped remove part of the tumour but not all of it. The Craniopharyngioma is resting on his pituitary gland.

Ray wants nothing more than to remove the tumour fully, and there is a procedure to do that, but it is not on the NHS. Therefore, Ray is unable to afford the medical funds for this.  Now he just does his best to get on with his life, but it is not an easy road he has been on.

How did you find out about your Craniopharyngioma?

I was always fatigued and having terrible headaches. One day I had a seizure. My Mum took me to the hospital, and they gave me an MRI. This is when they saw my brain tumour.

Now I am on watch and wait. I had to have 2 shunts to clear fluid off the brain, which built up in my brain surgery.

At first, it was weird having things in your head going down to my bladder, and frustratedly the shunt blocked so had to have new ones, but since then, touch wood, I have got used to it.

qoute from Ray Rice: I use to run a bar and local community centre, so we had 5 x 6 a-side football tournaments, with loads of teams that paid to play. We had a bouncy castle and food vans there,  we also had a raffle. We wrote to a lot of local companies who donated stuff to us like, signed shirts, car rides, fun days out etc. It was a great success!
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How Did You Raise The Funds?

I try to do my best in life. I work part-time.

I’ve done some fundraising for Brainstrust. Last year I raised over £10,000. This was done with a friend Sharon, who has a Meningioma.

I use to run a bar and local community centre, so we had 5 x 6 a-side football tournaments, with loads of teams that paid to play. We had a bouncy castle and food vans there,  we also had a raffle. We wrote to a lot of local companies who donated stuff to us like, signed shirts, car rides, fun days out etc. It was a great success!

What motivates you?

My Nan was my world, she always looked after me when I was a child and when I was unwell, and now she’s passed away I want to do good for her in my life.

Any advice for people or loved ones that get daunting diagnoses?

Wake up every day like it’s a new day and fight!!


Conclusion:

I am so humbled that Ray has shared his story with us. It has definitely not been easy for him on his Craniopharyngioma journey. It is so wonderful that he is still giving back to others by fundraising, knowing he himself is in need to remove his own brain tumour.

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Ray Rice was diagnosed with a low grade (benign) brain tumour in 1998
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