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It has paralysed Freya’s facial nerves – leaving her unable to smile or blink – and left her muscles too weak to walk or eat properly. Her family needed at least £5,000 for a vibrating-plate Galileo machine to boost Freya’s movement as it’s not available on the NHS.
Now they have thanked our readers after £6,000 in kind donations means they can buy the machine and physio support packages on top.
Mother Sophie Lock, 24, of Horwich in Bolton, Greater Manchester, said: “We are so amazed we raised the money so quickly!
“Lots of people have helped but we want to thank Daily Express readers for their generosity and learning about the rare condition.
“We’ve placed the order for the £5,000 machine from Germany but it may take some time to actually get it.
“But the extra money raised will help pay for the expert physio support packages which is great as we really need that.
“This means so much for us and Freya and we can’t wait to hear her giggle when she gets to use her own machine.”
Sophie, and Freya’s dad Michael Campbell, 25, had never heard of Moebius syndrome when doctors diagnosed her aged five months.
She was born with bowels on the outside, requiring complex surgery and not allowed home from Manchester’s St Mary’s Hospital until she was nine months old.
The condition means she has to be on a ventilator at night and, due to a club foot, must sleep with a boots and bar brace.
She has to be PEG (percutaneous endoscopic gastrostomy) fed via a tube going through her skin, into her stomach.
Sophie is a trained hairdresser but like many has been unable to work in lockdowns, while Michael works for delivery firm Amazon.
The mother described their daughter as having an amazing personality but she is frustrated as her condition leaves her unable to fully express herself.
Sophie explained: “Although she cannot physically smile she has a laugh that lights up your day and takes all our problems away.
“She has a naughty little giggle a kicks her legs when she’s excited and happy.
“She loves us rolling about with her and just being a bit daft.”
The Galileo machine stimulates her muscles and teaches her to balance herself so she can learn to step and walk – while boosting muscle tone too.
Sophie added: “Freya cannot speak or even sit unaided. Her upper body strength is like a baby’s.
“Her Moebius syndrome is quite severe. She will never be able to smile or blink and cannot feed herself.
“I’m her nurse, speech and language specialist or her physio 24 hours-a-day. I never feel like I’ve any time just to be her mum.
“But after we paid for her to try a Galileo vibrating machine at a private clinic and saw amazing results.
“She was like a different child and was rolling herself around the floor, giggling to play with her toys. It was amazing to see that.
“She can’t communicate verbally so sometimes it’s hard for me to know what she wants. It’s also helped her relax her arms too.”
Sophie added: “They recommend using it for half an hour a day so it would make a big difference.
“I’m overwhelmed already by how generous people have been.”
The machine isn’t available via her NHS physio, is manufactured in Germany and costs around £5,000.
Any extra money raised will go towards funding special physio care support packages which cost around £600 a year.
* To still donate via the Just Giving Page here.
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