Dan and Mel first shared their story in July 2014. We’re republishing it here as part of Scope’s 100 Days, 100 Stories campaign.
Dan and Mel’s son Oliver was recently diagnosed with cerebral palsy. Despite seeing specialists since a very young age, they had a long battle to get Oliver properly diagnosed, including nine months’ worth of tests.
“Oliver was different to other children, and we couldn’t explain why. Because of the issues and complex needs he had, he would do things like lick the radiator and lick the floor where it was cold. You’d go out into an environment where there were loads of other kids, and it was very obvious that he was different but we couldn’t explain why. You’d put him down on the floor and he would only crawl a little bit and then he would start eating the end of the table. We laugh at it now because we understand what he’s doing and why he’s doing it, but until that point we closed ourselves off and saw fewer people. We didn’t really want to go out – not because you’re ashamed, but you couldn’t turn round and say ‘This is why he’s behaving that way’.”
Mel explained that it was incredibly hard to get a firm diagnosis, “but as soon as we got one and accepted it, it made us even more proud of him. We knew he had problems, but we didn’t ever dream he’d have cerebral palsy. I even remember saying at the beginning [of the road to a diagnosis], ‘Oh yeah, but it’s not like he’s got cerebral palsy or anything, it’s not so major.’ He doesn’t look like what many people would think a child with cerebral palsy looks like. He can walk and he’s got a voice – he’s non-verbal, but he has a voice and he uses it.”
Oliver’s condition left many paediatricians guessing for nine months, with Dan and Mel persisting that his behaviour wasn’t right. “At first we went to a private paediatrician who told us there was nothing wrong with him at all. It was at a young age, but other things had been picked up by health visitors. I contacted the NHS to get him into the system and the paediatrician we got is fantastic.” Putting Oliver through months of tests was difficult on his parents, and particularly Dan. “It was certainly hard putting him through it, watching him being tested. He was getting to the point where he understood enough to know ‘Oh, it’s another person prodding me.’ He would cry as soon as somebody came near him, because even though he didn’t understand everything, he understood that things were going on. That was quite difficult.”
For Mel, she was determined to get a diagnosis. “It was really important to me. Not that it changed anything – I don’t care if he’s got two heads! But it mattered, and I can’t explain why. The moment we had a diagnosis and it had sunk in, for both of us it felt like a weight had been lifted.” Dan goes on to explain that “there were definitely more tears shed in the run-up to the diagnosis than since the diagnosis. We do not feel sorry for ourselves or wish for different things, whereas before we were searching. Now there’s no need to search – it’s difficult to get the diagnosis, but once you do it’s a lot of help.”
Dan and Mel are clearly both very committed to their son, persisting to ensure he has the best support and stimulation possible including occupational therapy and sensory integration. It’s clear they have an eye to the future but it is still very early days for them in terms of Oliver’s diagnosis. Getting Oliver’s diagnosis was the catalyst for Dan to take on a challenge he’d been talking about for 10 years – the London Marathon – an emotional rollercoaster or excitement and apprehension. “I went through a phase where there was lots of pressure – you just think to yourself, ‘I just can’t let anyone down on the day’.”
The couple chose to support Scope as it captured a charity that helped others with similar needs to Oliver. “It goes to helping people, that’s the main thing.” Thanks to the overwhelming response of friends, family, colleagues and strangers, Dan has now raised more than £15,000. As well as support at work, Mel explained that Oliver’s nursery did a mini-marathon. “All the kids walked round the park – they raised £1,200, and that was just amazing. I think it makes a difference that it’s his first time running, and we’ve just had the diagnosis. For us, it’s been wow! We didn’t dream we’d get anywhere near this.”
There are still places available to run this year’s Brighton Marathon for Scope on Sunday, 12 April.