The parents of a Harrogate teenager with cerebral palsy are aiming to raise £10,000 to fund a “life-changing” piece of equipment.
Piran, 15, is non-verbal and lives with agonising muscle spasms which he is unable to explain to his parents, John and Maria Smith.
The family is hoping to buy a Tobii Eyegaze, which would recognise Piran’s eye movements and enable him to communicate, as well as using learning apps and social media.
Maria told the Stray Ferret:
“It’s something he has used over the years, but it’s not very easily funded by the local authority. We’ve had a trial and borrowed it in the holidays, and he’s used it at school.
“They’re a lot of money, but they’re really worth it. If you can imagine never having told anybody anything, shared any feelings or concerns – even choosing is really difficult for him.
“It’s literally going to give him a way to share his personality with the world. It’s really life-changing kit.”
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Piran was diagnosed with cerebral palsy after being born three months premature.
He was able to speak when he was a toddler, and could walk with a frame when he was young. He attended Willow Tree Primary School up until year six.
Now a pupil at Springwater School in Starbeck, Piran especially enjoys swimming.
However, as his body as grown, he has lost some of his abilities and is now in a wheelchair. He has also developed other health issues over the years including dystonia, which gives him cramps and spasms throughout his body.
Maria said:
“He isn’t in a good way physically, but he shines like a little diamond. He is the most bubbly, cheeky, wonderful boy, and he has a wicked sense of humour.
“At Willow Tree, he made friends with everybody. He loves music – he listens to everything from The Doors to Iron Maiden to Pavarotti.”
The couple’s first fundraising event was a walk of more than 40 miles, covering the Harrogate and Knaresborough Ringways.
It took place last weekend, during heavy thunderstorms, and saw them camp out over night in a two-man tent along the route.
Maria said:
“It’s a long, tough, hard battle as a family. You’re doctor, physio and everything else – you wear lots of different hats through the day. You do feel quite lonely, and every disabled family feels the same.
“For the first walk, everyone said, ‘we’ll do it with you’, but we wanted to do it alone.”
However, there are plans in place for a group walk in September, this time covering just 20 miles, and Marian and John have opened it to anyone who wants to take part.
Next year, she’s hoping to draw on her experience in motorsport to organise more events to raise funds and awareness for people with conditions like Piran.
To find out more about upcoming events, visit the Walk for Piran Facebook group. To donate to the family’s fundraising, visit the Go Fund Me page.
Harrogate teenagers to embark on 48 mile walk in aid of UkraineTwo Harrogate teenagers are set to embark upon a 48 mile walk in two days in an effort to raise money for Ukraine.
Grace Brierley and her friend Elena Dickson, who are both 14, will start the walk by taking on the Knaresborough round on Saturday, July 9.
From there, they will walk the Harrogate ringway on Sunday and will be camping out in between.
Money raised will go towards United 24, an initiative set up by Volodymyr Zelenskyy, president of Ukraine, amid the war with Russia.
The charity aims to be a direct source for donations for the country and helps with medical aid, rebuilding and defence.
Grace and Elena have set up a JustGiving page as part of their walk. You can find their page here.
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