Julie Evans
Julie's Ultra Summer and a Big Splash!
Fundraising for Nerve Tumours UK
Story
I have decided to take on a series of running and cycling challenges in 2015 to raise money for The Neuro Foundation. Darren (my son) is also taking on an overnight swim to raise money too!
10 years ago Darren had an operation to remove a brain tumour. The operation went well, though it has left him deaf in one ear. He was back cycling within a fortnight (just as well as, by his own admission, he becomes really grumpy when he doesn't get out of the house!) though for 6 months he had problems with balance, motion sickness and fatigue. It made running and swimming really difficult and his lack of balance meant that he kept crashing his bike which we still laugh about!
4 years later, however, it was back and bigger than it had been before. It meant another operation which went well again but this time he had to undergo a course of radiotherapy every day for 6 weeks as well to make sure it was really beaten this time. He gets regular MRI scans and, so far, the signs are that it isn't coming back.
Then, at the end of 2014 he had to have ANOTHER operation, this time to remove the same type of tumour but from the lower part of his spinal cord. There's also another tumour, much smaller, growing further down. For now the specialist has said it's too small to need to be removed but he expects it will need to come out in the future.
Because it has happened so many times, he's now been diagnosed with Type 2 Neurofibromatosis. It's a genetic condition that causes tumours to grow on the nerves of the central nervous system as well as some of the peripheral nerves around the body. Although they're generally benign they can cause problems with pain and mobility. He has had back and hip problems for a long time that can be attributed to the tumours on his spine.
As the name suggests there is more than 1 type of this condition (there are actually 3 types- Type 1, Type 2 and Schwannomatosis). Type 1 is the most common with around 25,000 people in the UK suffering. Type 2, however, is much rarer with as few as 1000 people suffering.
The sufferers of all types can go through a lot of difficulties. It can cause some unpleasant disfigurements, chronic pain and mobility issues. Darren has been really lucky in that he's bounced back each time. The spcialists put this down to the fact that he is so fit through years of triathlon training. Apparently all the 5am starts for training and racing have been more than worth it!
Between the two of us we're taking on 4 challenges this year. First I'm taking on the Preseli Ultra Beast - a 31 mile run over the Preseli mountains! It's tough, uncompromising terrain where the weather can change in an instant!
Two weeks later I'm taking on the Taff Trail Ultra - 42 miles along the Taff trail from Brecon to Cardiff. This will hopefully be a little kinder but, with an extra 9 miles, it's going to be a long day!
In August I'm doing the RideLondon 100 mile bike ride. I've cycled for a number of years but only up to around 35-40 miles at a time to do some triathlons. I expect it's going to hurt!
In June, Darren is doing the Brutal Events Night Swim. The most recent operation has left him with some problems in his hip which make running a bit more difficult. He's getting over it, but what he has been able to do lots of is swim! The Night Swim is a 12 hour, overnight swim in a lido (a huge swimming pool- about the size of a rugby pitch). It starts at 7:30pm and finishes and 7:30am (i.e. the following morning!) and the challenge is to swim as far as you can in that time!
The Neuro Foundation is a small charity that supports people living with this condition with specialist advisors around the country. Darren has been very lucky in that his life hasn't been affected too badly though there are plenty of other people who really suffer. At the moment it's incurable and the treatments available are potentially very expensive. Raising awareness about the condition is also a vital part of the services they provide. As it's a rare condition, many medical professionals haven't ever heard of it which makes treating it even more difficult.
Thanks for taking the time to read this. Any donations you can make are really, really appreciated
10 years ago Darren had an operation to remove a brain tumour. The operation went well, though it has left him deaf in one ear. He was back cycling within a fortnight (just as well as, by his own admission, he becomes really grumpy when he doesn't get out of the house!) though for 6 months he had problems with balance, motion sickness and fatigue. It made running and swimming really difficult and his lack of balance meant that he kept crashing his bike which we still laugh about!
4 years later, however, it was back and bigger than it had been before. It meant another operation which went well again but this time he had to undergo a course of radiotherapy every day for 6 weeks as well to make sure it was really beaten this time. He gets regular MRI scans and, so far, the signs are that it isn't coming back.
Then, at the end of 2014 he had to have ANOTHER operation, this time to remove the same type of tumour but from the lower part of his spinal cord. There's also another tumour, much smaller, growing further down. For now the specialist has said it's too small to need to be removed but he expects it will need to come out in the future.
Because it has happened so many times, he's now been diagnosed with Type 2 Neurofibromatosis. It's a genetic condition that causes tumours to grow on the nerves of the central nervous system as well as some of the peripheral nerves around the body. Although they're generally benign they can cause problems with pain and mobility. He has had back and hip problems for a long time that can be attributed to the tumours on his spine.
As the name suggests there is more than 1 type of this condition (there are actually 3 types- Type 1, Type 2 and Schwannomatosis). Type 1 is the most common with around 25,000 people in the UK suffering. Type 2, however, is much rarer with as few as 1000 people suffering.
The sufferers of all types can go through a lot of difficulties. It can cause some unpleasant disfigurements, chronic pain and mobility issues. Darren has been really lucky in that he's bounced back each time. The spcialists put this down to the fact that he is so fit through years of triathlon training. Apparently all the 5am starts for training and racing have been more than worth it!
Between the two of us we're taking on 4 challenges this year. First I'm taking on the Preseli Ultra Beast - a 31 mile run over the Preseli mountains! It's tough, uncompromising terrain where the weather can change in an instant!
Two weeks later I'm taking on the Taff Trail Ultra - 42 miles along the Taff trail from Brecon to Cardiff. This will hopefully be a little kinder but, with an extra 9 miles, it's going to be a long day!
In August I'm doing the RideLondon 100 mile bike ride. I've cycled for a number of years but only up to around 35-40 miles at a time to do some triathlons. I expect it's going to hurt!
In June, Darren is doing the Brutal Events Night Swim. The most recent operation has left him with some problems in his hip which make running a bit more difficult. He's getting over it, but what he has been able to do lots of is swim! The Night Swim is a 12 hour, overnight swim in a lido (a huge swimming pool- about the size of a rugby pitch). It starts at 7:30pm and finishes and 7:30am (i.e. the following morning!) and the challenge is to swim as far as you can in that time!
The Neuro Foundation is a small charity that supports people living with this condition with specialist advisors around the country. Darren has been very lucky in that his life hasn't been affected too badly though there are plenty of other people who really suffer. At the moment it's incurable and the treatments available are potentially very expensive. Raising awareness about the condition is also a vital part of the services they provide. As it's a rare condition, many medical professionals haven't ever heard of it which makes treating it even more difficult.
Thanks for taking the time to read this. Any donations you can make are really, really appreciated