A ten-year-old Laois boy is at the centre of a fundraising campaign to secure robotic legs to allow him to reach his full potential.
Jamie Mannion from Portlaoise has a disorder that has baffled doctors, according to his mother, Siobhan.
“He is non-verbal and can’t walk. He can crawl and climb and stand and step with our help but he needs our support in every way. He also has refractory epilepsy and a lot of sensory issues,” she said.
“But in describing him, it’s his eyes, his bright smile and the fact that he’s probably my best friend, is what I focus on.
“He is the cheekiest child. He loves music, the outdoors, tractors and noise. He is learning how to use what is known as an ACC (augmentative and alternative communication device.)”
Last year Siobhan and her husband Declan who have another son, Ryan (13) who is a student at Dunamaise College, got the chance to bring Jamie to Toronto for intensive therapy where he used a Trexo robotic walker.
Throughout Jamie’s life, Siobhan and Declan have been supporting him and pushing for therapies that would help him reach his potential.
“We have been working online with teams from the US and Canada since lockdown and that has changed his and our lives. No is not an answer we do well with,” quipped Siobhan.
After telling Jamie’s story on the Ray D’Arcy show, Siobhan got a call from Leslie Shaw who runs Portumna marine.
“He had been in touch with Trexo Robotics as he wanted to help out. I had never met this man before. Yet he wanted to help out. Ever since, he has supported us. He set up www.trexoforjamie.ie and sent in a crew to make a video.”
Siobhan is Jamie’s carer and works part-time. Jamie attends St. Anne’s, Roscrea.
“It is hard to get time to do all the extras that are involved in supporting Jamie, along with raising our fabulous other son, Ryan.
“Jamie’s grandad passed away recently so it has been a busy time for us and Leslie has done so much for us in setting up the website and planning how we can get Jamie his own robotics,” said Siobhan.
“The fact that a stranger heard me talk about Jamie and while having a family and full-time job of his own, is taking the time out to support us reminds us of the good in humanity.
“Of course the first time Jamie met him, he took to him instantly. He hugged him most of the day,” she said.
“We are also lucky to have a basketball pro in Ryan’s basketball club, Portlaoise Panthers, who supports Jamie in his ACC use.
“Again Jamie fell in love with her instantly and they have a beautiful bond.
“Jess Fressle, who is the ladies team senior pro, has an MA in assistive technology from the US.
“She and Jamie adore each other and of course as she knew we needed support, she organised that her ladies senior team would donate all the proceeds from their last home game to Jamie’s fund. Jamie was guest of honour at the match and he loved it.
“To buy the full Trexo and ship it here it will cost €45,000. We have €8,200 raised so far,” Siobhan said.
“Ideally, we are looking for corporate sponsorship. This is a huge opportunity for a corporate sponsor to change Jamie’s life and ours, and work on an inclusion charter as the Trexo will allow for Jamie to experience walking regularly which cannot occur without it.
“This will mean he can be a bigger part in the community that supported us in so many ways. He can be independent, taking part in inclusive sports or fun runs for example.
“However, we welcome fundraising events from local clubs or sports people who are perhaps competing this year and would like to do so for #trexoforjamie”
For more information see www.trexoforjamie.ie or insta @jamies_gdd_diary
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