Dad-of-one Graham Wood, 36, has terminal brain cancer and when he was diagnosed in 2015, he was told he would probably die within two to four years.
Although devastated by the diagnosis, Graham, from Pevensey, East Sussex, wanted to remain positive and spend as much time as possible with wife Amber, 37, and son Reuben, who had just turned one when they got the news.
Amazingly, Graham has outlived the initial prognosis, but his condition is still terminal – and now the family have been given the heartbreaking news that Reuben was born with Duchenne muscular dystrophy.
It is a genetic condition which leads to progessive muscle degeneration throughout the whole body. It will mean he will probably be unable to walk by his teenage years and won’t live to see his 30th birthday.
Aware that he may not be here to help as Reuben’s illness progresses, Graham wants to do everything he can to set up the things his son will need.
He’s fundraising £25,000 to buy equipment, fund therapy and future home alterations so Amber and Reuben have something there after he is gone.
He tells Metro.co.uk: ‘I know I’m not going to be around too much longer and it’s all about making sure life will be better for them.’
Back on 6 June 2014, Graham and Amber were new parents to two-month old Reuben when an unexpected accident changed their lives.
Graham was out on his motorbike and had a seizure – the first symptom he had had of a brain tumour.
Graham explains: ‘I was riding home and the next thing I know, there’s two police officers at the end of the bed.
‘It turned out that was my first seizure. I’d had absolutely no symptoms before that.
‘I was seizing when the paramedics arrived and they assumed that it was because I had hit my head.
‘I had a CT scan, which showed a mass and then an MRI scan and it became clear that the seizure caused the accident, it wasn’t that the seizure was the result of the accident.’
Graham also suffered a broken arm and deep muscle bruises and was kept in hospital.
The doctors told him that he would need to go for an appointment at a neurocentre but says he wasn’t told why.
He says: ‘It was obviously completely out of the blue because I didn’t have any other symptoms.
‘A few weeks later, I went to see the neurosurgeon for the first time and that was when they told me that I had the brain tumour the size of a plum.’
Looking at the scans, doctors thought the tumour was low grade and slow growing, and as the deep muscle bruising had caused a blood clot, Graham was told they wouldn’t do surgery right away.
11 months later, in May 2015, he had surgery to remove as much of the tumour as possible.
A biopsy following the surgery revealed that it was a grade three cancerous tumour, which shocked everyone.
Graham says: ‘We went for the follow up results and I was pretty sure they were going to say to just keep an eye on it and off I would go, but I got there and they were making an appointment for the cancer centre.
‘At the cancer centre, they told me the prognosis was two to four years.’
Now five years on from being told about the terminal diagnosis, Graham is doing well and is taking each day as it comes.
He is currently on the STELLAR trial which is testing the use of eflornithine oral solution alongside chemotherapy, but doctors don’t know exactly if and when Graham’s condition will deteriorate.
He says: ‘From the beginning I was quite pragmatic about it. I was upset, of course, but I didn’t want to just wallow in self-pity. I just knew I had to get on and do everything I could to stay well and help Amber and Reuben.’
As Reuben grew up, the couple realised that he wasn’t meeting the same milestones as his peers and the family were given the second difficult diagnosis.
He explains: ‘He started nursery and his drawing wasn’t as good and his running wasn’t as good. Then he started school and it was highlighted even more.
‘He’s never been able to do a two-footed jump, for example.
Signs and symptoms of Duchenne muscular dystrophy
DMD is rarely diagnosed at birth. Typically, it is diagnosed when the child is between 2 and 5 years old.
When you are looking for signs that a child may have DMD, you should watch them running and getting up from the floor. Muscle weakness is more noticeable during these activities.
Symptoms can include:
- Delay in the ability to sit and stand independently
- Large calf muscles (pseudohypertrophy)
- Trouble running and jumping
- Unusual gait when walking
- Using the Gower’s Manouevre to get off the floor (where the child has to use their hands and arms to “walk” up their own body from a squatting position due to lack of hip and thigh muscle strength)
‘It was just all building up and we had an inkling that something was wrong. He was just never catching up.
‘When the diagnosis came, it was confirming our fears rather than a massive bolt from the blue at that stage. With all the tests, we’d been thinking about it for quite a long time.’
They were told that Reuben’s muscles would all slowly degenerate, making it harder and harder to move and for his body to work. The disease is life-limiting and the average age of death for those with the condition is 25.
Graham knew that Reuben and Amber would need lots of help as Reuben got older, but because of the brain tumour, Graham probably wouldn’t be around to give it.
So with the help of some friends, they set up a fundraising campaign, to create a fund for anything Reuben will need in the future.
They hope to get a three-wheeled trike, which costs £2,000, then a bike with a detachable front mounted wheelchair, which costs another £4,000.
They hope to be able to get a hot tub for some water therapy as his condition progresses.
They also want to have money in place for equipment and home alterations and anything they can do to slow down his condition and relieve pain.
He says: ‘There seems to be so many things you can spend money on and I want Amber to just be able to go and do that, without worrying about the cost. I just want to give him the best of everything.
‘I also want to be able to make the most of any time left we have together.’
To donate to the Woods’ fund for Reuben, visit their JustGiving page.
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