Unite for Reuben.

Scene: the ITU at the adorable neurological centre, Haywards Heath, back in 2015. 22nd of May, to be precise. I’m stirring slightly on my bed, one eye swollen shut, bandages partially over both ears, and staples already itching in my scalp. I’m so tired. And grumpy. The anaesthesia is still heavy in my body, and I can almost feel my brain groggily mending itself after the latest invasion. 

Despite the tiredness, and infinite miserable energy pouring out of me, this stranger manages to keep me talking for a good few minutes before I happily pass out again. Then before I know it, I’m on the ward and the nurses are bringing me cups of tea and asking me if I’ve opened my bowels yet. It’s so funny, I don’t recall my time in the ITU after either of my brain ops – in fact, I once said to the parents ‘oh, I was only in there a couple of hours’, to which they replied ‘Grace, you were in there for two days!’ – but I remember that little flash of goofy cheer. I tell my family about the strange man who insisted on chatting with me while I was trying to black out peacefully. I start asking the nurses how he’s doing, once I remember his name – Graham. And then that goofball visits me on the ward, with his fiancee, and I find out they have a one-year-old son, too. I also learn that he’d been diagnosed and put in for surgery roughly six months after he’d had a seizure on his motorbike, which made him crash on a local roundabout. He and I become friends on Facey B, and stay in touch after we both go home to recover.

We got our histology results around the same time, a couple of weeks after our ops. (Don’t test me on that though, my memories of that time are a little compromised, to put it lightly.) I got mine first, and it was the same as the year before; low grade in a weird place, misbehaving cysts, etc. etc. Then on Grandma Latter’s birthday, while we were sitting in the garden having cake and bevs to celebrate her (she was in our local hospital at the time, mere hours away from a peaceful departure) I got a message from Graham to say he’d had his results back. Higher grade than they expected, very aggressive… two or three years. I remember having a proper cry then, on my blanket in the garden with a slice of cake in my lap. I then read the message to the family and declared ‘it’s just not fair.’ Because it wasn’t. He had a one-year-old son, a lovely fiancee, a job in place, and a whole future he’d just started to step into. How can it all be taken away, just like that? Why would the universe choose him, of all people, to go through this?

I’m happy to say that Graham is still with us, smashing the original prognosis, thanks to treatments – and undoubtedly, that unyielding cheer and dark humour. He and Amber married in May 2016, and by all accounts had a delightful honeymoon. Little Reuben is now five years old. Life is rolling on.

But unfortunately, my pal is not out of the woods just yet. He found out in February this year that his brain bugger is back. My family (and the rest of our Strictly Come Dancing group chat) didn’t find out about this until recently. I mean, what can you say? I guess it’s not surprising that it’s reappeared, and we can only hope that more treatment (which will be happening at my beloved Marsden, in Sutton) will sort it out and give him more time.

And that’s not the end of the sh*t he and Amber are facing now. 

Their lovely Reuben has recently been diagnosed with Duchenne Muscular Dystrophy, a muscle-wasting disease that will affect him massively growing up, and ultimately shorten his life. Realistically speaking, he will be lucky to make it to 30. Those are the hard, horrible facts.

Duchenne Muscular Dystrophy is incurable. There are charities for it, such as Duchenne UK and their partner Joining Jack, who are doing their best to help those who are living with it, and a few celebrities support these charities, too. But unfortunately the disease is not getting much publicity and research, because it’s too rare. (Not unlike brain tumours, I would add grumpily.)

The Wood family have had to face some of the hardest things anyone can, in recent years. But they have the toughest spirits, and unwavering cheer. When Amber slipped a disc last winter, they would still come round for Strictly parties with us – we propped her up with pillows, and she didn’t complain once. Graham’s Facebook statuses are the kind that make you cover your mouth in horror while shrieking with laughter (my favourite one was when he said he was having to wait two weeks for a GP appointment, and tacked on ‘it’s fine, not like I’m dying or anything’). Reuben is a total sweetheart, and what he lacks in muscle and energy (he can only walk for about 20 minutes before he gets tired) he makes up for in cheekiness, and the most genuine smiles.

While I’m sure this badass family could make it through this with only their natural cheer and determination, they will of course need financial support too. That’s why Graham and Amber have created their #unite4reuben Instagram account and fundraiser; please check out the JustGiving page and read their story on there, because it will tell you everything you need to know about the costs of raising a child with an incurable disease. If you can’t spare any pennies right now to donate (which is totally understandable; these are weird times and a lot of folks, myself included, are only just scraping by on furlough) then please share the link around. I’ve tweeted about it, and won’t stop tweeting about it until they’ve reached their goal. I’ve already had people unfollow me because of how much I’ve been yelling about it – good riddance to ‘em.

My family are working on a plan for an epic fundraising event, which I will be announcing on here and my social media platforms once it’s all sorted. Keep an eye out for that. All I’ll say for now is – if any readers who run their own creative businesses, have some good connections or perhaps work at companies that help with causes like this, could slip into my DMs on InstagramTwitter, even my Facebook page, that would be much appreciated.

The universe has messed with the wrong people. Let’s do what we can to help them, shall we? 


posts you've really liked.