Sam's Starts his Fundraising Journey with Shine

24th September 2020


Sam, who has hydrocephalus, and his Dad are challenging themselves to do a charity walk for Shine on 27th March 2021.

They will be joined by friends and family throughout the 23 mile walk around Rutland Water, Leicestershire, and have set a target to complete it in a day.

It is lovely to see Sam so passionate about his challenge and raising money for Shine. We wish you the best of luck on your walk and in starting your fundraising journey with Shine!

(They will adhere to the latest government guidelines at the time of the walk and adapt accordingly)

About Sam

In March 2004, aged 11, I was diagnosed with a brain tumour, completely out of the blue. I had been having several migraines over a period of time, with the last one being a particularly bad in the middle of the night on March 17th. The effect this particular migraine had was losing my balance, walking into walls and feeling sick.

My mum took me to the local doctors in the morning and I was referred to the local hospital, Leicester Royal Infirmary. I had a MRI scan straight away and waited a week for the results. When I went back with my Mum to get the results, I was diagnosed with a brain tumour.  The tumour caused hydrocephalus as it blocked the usual flow of fluid around my head and body.

This led to me being admitted to the Queens Medical Centre in Nottingham. I was to spend the next 3 months on the Paediatric Neurosurgery ward. Within the first week, I had undergone surgery to attempt to remove the tumour. Fortunately, this was successful. However, the surgery has caused me to forget how to walk! I eventually got this skill back by practising over the next few months, with help.

To help manage the hydrocephalus I needed a VP shunt. A shunt is a small valve that has 2 catheters, one to take the fluid and one to let it out further down the body, avoiding the gathering of liquid. If the shunt wasn’t there, this would cause my head to swell.

Not many have heard of hydrocephalus, as when I tell them, I have to explain that it is the accumulation of liquid in the head as it can’t circulate around the head or body as normal because there is a blockage somewhere along the way.

The affect it’s had on me are not obvious at all, which I am very lucky for. My memory isn’t great (which might just be a male trait, but I’m not one for stereotyping!), my balance still isn’t the best and I also suffer from fatigue and drowsiness every now and again.

However, I’m quite a determined person and don’t give up easily. The only clear changes its had on me are a small change of shape of my head and that I can’t go through the scanners at airports, which I have to take an official card with me to explain the reasons I can’t walk through.

Considering I had been through all of this, I have lived just like any of my friends. Nothing particularly changed and I’m very grateful for this.

However, in 2008, at the age of 15, I was taken back into the Queen’s Medical Centre to fit a new magnetic VP shunt, where the dial of how fast or slow the fluid was drained, could be changed without surgery. In 2019, my shunt failed, caused by damage on the tube that runs through my chest, meaning I needed a new one!

I’m very lucky to be where I am today, with the minor effects it has had on me day to day, and I’m eternally grateful to the people who have helped me along the way.

I have previously helped raise money and awareness for Brain Tumour Research and now I want to give back to help the battle against hydrocephalus and support Shine.

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