The small fix to help an incredible young boy
Dáire was born with a rare syndrome now a new invention will give him back his independence
IN so many ways Daire Gorman is like any other 12-year-old — he loves playing video games and is obsessed with Liverpool Football Club.
But Daire has a condition that holds him back — he was born with Crommelin Syndrome which is so rare that only a few people in the world actually have it.
‘When Dáire was born we found out he was missing both of his arms,’ his mum Shelley explains. ‘Doctors knew there was a problem with his legs but they didn’t know what it was initially but after x rays and tests it was found that the femur bone didn’t develop in either of his legs.’
But, now aged 12, Dáire has defied the odds as his determination to be as independent as he can spurs him on.
‘They were told when I was born that I would never walk or move about but I defeated those odds,’ he says. ‘I am doing most things that normal children do but in a different way.’
Shelley adds: ‘He started to walk when he was four. If he wants to do something badly enough he will figure it out.’
Dáire though became unable to walk three years ago as his feet became too sore. He took solace in his video game, using his feet to play after school but an operation to ease his pain meant he could no longer play them the way he used to.
Which is why Dáire applied for RTE programme Big Life Fix which will be shown on RTE One tonight at 9.35pm.
‘When I stopped walking I felt like giving up,’ he tells the programme. ‘I cried myself to sleep.’
The Monaghan family applied for Big Life Fix because they had seen how series one worked wonders for people.
‘We had watched the first series of the show and we’d seen how it had helped people with things they wanted to do and things they struggled with,’ Shelley says.
‘And we thought why not give it a go and see if Dáire was selected.’
SHELLEY says she and her husband Kenny were nervous at first about putting Dáire in front of the television cameras, given what he has already been through in his short life.
But the bubbly and intelligent child deserved help.
‘We were worried because putting your child out there is massive,’ she says. ‘You don’t know what kind of reaction they would get. But at the same time we were excited, wondering if someone could make a difference to Dáire’s life so we decided to give it a go and see what happens. And if it works, that’s brilliant but if it doesn’t we can’t say we didn’t try.’
Step forward inventor Trevor Vaugh of Maynooth University, one of the Big Fix team who are changing lives.
The Big Life Fix team harnesses the power of science to create tailor-made inventions for individuals and families.
Between them, they can build everything from space satellites to life saving medical devices and military hardware. This incredible team includes Trevor, rocket scientist David McKeown (UCD) , software engineer Niamh Stockil (Microsoft), electronic engineer Shane Phelan (Logitech), robotics expert Peter Redmond (Mechatrons) and designer Lorna Ross (VHI).
But it is Trevor’s job to try and come up with something that will help improve Dáire’s life.
Dáire has already overcome many challenges but he struggles to write at school as, though his responses are quick in his head, he can write slowly with a pencil and type at the same speed with his arms. It is laborious and cumbersome for him, which he sometimes finds frustrating.
‘I struggle to keep up with the class,’ he tells the cameras. ‘I have to tell someone the answers and they write it down on the thing whereas I would absolutely love to write it myself.’
Trevor feels the equipment Dáire has is letting him down so he enlists the help of Niamh and Shane to create two things for Dáire - first of all a special cuff that will allow him to be able to play his beloved video games comfortably again and then a special computer with a split keyboard that has different elements which will speed up his homework and allow him to write himself.
‘Gaming is not a passtime for me,’ says Dáire. ‘If I have had a tough day at school and I’m really frustrated and tired I come in here to relax from everything. This is my holiday.’
And when he is shown the special invention, Dáire is almost overwhelmed.
‘I’ve always wanted to be an independent person and this is really going to help a lot.’
Mum Shelley agrees that the devices have already helped Dáire get more enjoyment from his life.
‘They have helped Dáire with a fun element of his life,’ she says. ‘It gives him a break away from everything and it makes gaming so much easier. He was in a lot of pain and it eases the pain and gives him something to look forward to every day, something that he loves doing.’
Now Shelley’s next challenge is finding some technology that will help Dáire keep up in the classroom when he heads to secondary school later this year.
‘This really has been lifechanging for Dáire,’ she adds.
Big Life Fix will be on RTE One at 9.35pm on Wednesdays from tonight and on the RTE Player.