On Sunday, May 2, I’ll be lining up at the start of the Great West Run in Exeter alongside my teenage son Tom and 3,000 other runners. It will be my first half marathon.
I’m raising money for the FUN Club – the Frenchay Unit Neuro Club based at the Barbara Russell Unit children’s ward at Frenchay Hospital in Bristol.
It is the regional children’s neurology specialist centre, treating children with brain injuries, disabilities and illnesses from all over the South West. I’ve seen the amazing work that goes on there every day. The FUN Club organises meet-up days out for patients past and present around the region, as well as a Christmas party.
At the moment I’m raising sponsorship offline. The charity is working on a Just Giving account, so I’ll post a link when it goes live. Meanwhile, here’s why I’m supporting the FUN Club, which is run by a small group of volunteers.
Isobel aged six just before she fell ill
In 2000, when we were living in Bristol, my six-year-old daughter Isobel became ill with idiopathic intracranial hypertension.
The unpleasant symptoms mimic a brain tumour – raised pressure in the fluid around the brain and spinal cord, causing headaches, sickness and eye damage which can lead to blindness.
The cause was never found, as in most cases of this rare chronic illness. The treatment was aggressive medication with diuretics, and lumbar punctures to relieve the pressure by removing excess fluid.
Isobel spent several weeks on the ward at Frenchay before her condition was stabilised and she was allowed home.
But she grew worse and a year later, after we had moved to Exmouth, Isobel had a series of operations to fit a lumbar-peritoneal shunt – a one way needle valve surgically inserted into her spinal cavity – to drain the excess fluid into the space around her stomach. But complications eventually caused it to fail and it had to be removed.
On the ward after an operation
So she was back on the diuretics and regular lumbar punctures, under general anaesthetic, to relieve the pressure.
The years that followed involved regular trips up and down the M5 to Bristol. Then for no apparent reason in 2007 Isobel, by then aged 14, began to get better. She is now off medication and able to live a pretty much normal life.
We will always be grateful for the care Isobel received at Frenchay and the support we received as a family, which helped us through some dark and difficult days. Many of the people we met there became friends over the years.
Isobel now
We met children coping bravely with the most severe injuries, illnesses and disabilities.
And throughout we were comforted, reassured and inspired by the people who work there – doctors, nurses, teachers and ward staff. The children’s unit is an incredible place, filled every day with laughter and hope.
As well as devoting their working life to the young patients, members of staff also give their own time to raise money and organising extra treats through the FUN Club. And that’s where the money I’m raising will go.
If you want more info, email me at e.p.oldfield@gmail.com, or contact me via twitter @Ed_Oldfield.
