A BORDERS couple are trying to raise £20,000 so their three-year-old son can receive specialist treatment in the USA.
Nikki and Richard Ramage, of Peebles, have set up an online fundraising page for Charlie, who has hypotonia and dystonia – conditions which cause the youngster a lot of pain and discomfort.
“He goes like an ironing board, and he can be stuck like that for an hour or so,” said mother-of-two Nikki, 30.
The family hope to pay for treatment at the NAPA Centre in Los Angeles, which would provide Charlie with up to four weeks of physiotherapy, speech therapy, and occupational therapy.
Hypotonia is commonly known as floppy baby syndrome, and is due to low muscle tone. Meanwhile, dystonia causes Charlie to have muscle spasms.
“He can’t understand [why it’s happening] or communicate without screaming,” said Nikki.
Nikki’s main hope for Charlie is that the treatment will give him the skills to sit up by himself and to swallow without fear of choking.
“The main issue is he can’t control his [muscle] tone,” said Nikki.
“So he can go from floppy to rigid really easily, but if it [the NAPA Centre] could help him control it then he might be able to control it for long periods of time to allow him to sit.
“The speech therapy side of things would be incredible if that could help him as well.
“He wants to communicate, and he does make a lot of noises and he tries to communicate but there’s no words there.
“Everyone wants to hear their kids say ‘mummy and daddy’. For him to say stuff like that – thinking about it is making me want to cry – it would be incredible.
“It’s all about strengthening his muscle tone in his face as well, so if he can strengthen the muscle tone in his face it will help him with his swallowing, hopefully he won’t choke as much and also it will help him be able to say words.”
Over the last year, where Nikki and Richard, 36, have been at home more because of the pandemic, the couple have been blown away by their elder son’s progress.
Nikki said: “Charlie is constantly improving – he’s so determined.
“Lockdown seems to have done wonders.
“I think because Charlie’s had all this time – family time in particular – it’s made a huge difference to him.
“His little brother has brought him on, because he sees Theo (aged 21 months) doing things and he [Charlie] will try to copy him as hard as he can.
“They’re proper best friends. I think they’re both lucky to have each other – especially for Charlie’s sake.”
So far, the family have raised more than £9,000 which has come from donations via their website, as well as from local businesses, and a raffle for a signed Celtic jersey.
“We’re gobsmacked at the generosity and just hope people keep doing stuff and support us,” said Nikki.
The family also hope to raise more than their target of £20,000 to cover any additional therapy sessions they think Charlie will benefit from.
To donate to Charlie’s fundraiser, visit: justgiving.com/campaign/CharliesTherapyDream