A Berwick couple whose baby son was recently diagnosed with an incurable disease have been stunned by the support they have received.
Eleven-month-old Roman Greenlees was diagnosed with Aspers disease, a rare degenerative illness that cannot be treated.
A fundraising page was set up and the appeal, ‘Help for Roman’, has really taken off.
“When the page was set up, we expected to raise a couple of hundred pounds,” said dad Stuart, 28. “But the response has just been mad, absolutely mad.”
At the time of going to press, the fundraising website had raised over £8,000, from 688 different donators.
That roughly matches the sum that star comedian Jason Manford is donating.
The stand-up heard about Roman while performing in Berwick at the weekend. He decided to help, and visited Stuart and Rachael.
Manford said that “the local community have rallied around, but I thought maybe we could stretch to a wider community.”
He went on to give away the profits from his recent Berwick shows, around £8,000.
“It’s bewildering, a celebrity like him coming to your door, just pulling up in his car outside,” said Stuart. “He posed for pictures and chatted a bit with us, and I felt a bit daft, because I’m a fan, I really am, but you always risk sounding like a bit of a slavver saying that when he’s donated so much money like he did.”
Stuart was serving as a firefighter with the RAF in Afghanistan when he heard the news about Roman’s illness.
“It didn’t sink in at all when I first heard,” he said. “I was getting Facebook updates and texts. So I knew the little lad was ill, and had trouble eating and so on, but I didn’t know there was anything seriously wrong.
“I was on the phone to him, and he’s gurgling down the line to me, ‘Dadda, dadda’. Then the next time, it’s Rachael telling me Roman’s been bluelighted to the BGH, and then to Yorkhill Hospital for Sick Children in Glasgow.
“With that, I got Rachael to put in for compassionate leave and set off for home.” Stuart was at his son’s bedside in 24 hours.
“The RAF were great with that,” he said, “normally when you put in for compassionate, the officers get offered it first, but I was put right at the top of the list.
“We stayed two weeks with him there, in a charity run hotel, the Ronald McDonald.
“It was like seven floors of hell. Parents of kids with cancer on one floor, all that. You leave the hotel for five minutes and it’s a completely different world.”
Roman is now back at home, and even though he doesn’t know it, his community is rallying around him to make his life enjoyable, primarily aiming to get him a sensory room.
“The equipment that they have in Yorkhill, and in the Grove School in Prior, it’s fantastic,” said Stuart, “but it’s really expensive.
“Roman needs help with his posture - at ten, eleven months, he should be crawling, and able to hold himself up a bit, but because of these problems with his genes, he can’t.”
A host of different sponsored events are being organised around the town, from Fun Days at The Barrels pub to special auctions and fun runs.
Dad Stuart is going to be one of the men having their legs waxed in the Brown Bear, and will also take part in a 24 hour treadmill run at the town hall this weekend - something his friends back in Afghanistan are also trying, in 45 degree heat.
Stuart went on: “The fundraising is to get him his own sensory room, with lights, projectors on the wall, things like that to keep him occupied and happy.
“We also have a plan to get his baby passport, so that we can take him to Disneyland - he’s obsessed with Minnie Mouse!
“It’s all about getting things like this together so that the three of us will always have those kind of memories.
“Our neurologist told us the chances of someone getting this at birth is one in 200,000. It depends on the parents being carriers, who don’t have the disease but can pass it on.
“Apparently the chances of Rachael and me meeting, and conceiving a child with Alpers, is astronomical, it shoots up to something like one in a billion.”
“It sounds stupid,” Stuart continued, “horrible, but you almost wish it was something like cancer. It’s just that with almost anything else, you can treat it, you can try things.”
Mum Rachael agrees: “With this, it’s horrible because there are no signs or symptoms at all.”
“We were told if he starts in with a seizure, to let him seize for five minutes,” said Stuart.
“But that’s just not possible. Your son’s lying there in seizure, you can’t just sit there with a cup of tea, counting off five minutes. I’m straight in there with the medicine.
“Since then, we’ve had more meetings with our neurologist, and while there’s still no time scale, things have changed.
“When we were first told the problem, we were just told that Roman wouldn’t grow old.
“After more tests and his second biopsy, that’s now become just ‘sometime up to a few years’.”
“I’ve found I can say these words, and talk to people about it, but I know the real meaning of what I say hasn’t yet sunk in. I’m not sure what that means about what level we’re at in dealing with this.”