Against all the odds, a 19-year-old Duchenne Muscular Dystrophy [DMD] sufferer from Magherafelt has fulfilled his dream of going to university.
Now Marc Lupari and his mum Marina are hoping his journey will inspire others with limiting conditions to stay in education, if that’s what they want.
Despite having the results to study for a degree in computing with game design, Marina said Marc almost missed out because it took so long to get a suitable wheelchair for the journey to Coleraine.
“He couldn’t go because of his wheelchair,” she explained, “he was going back to St Pius X because he had been waiting over 20 months and ended up with a massive pressure sore. We couldn’t have imagined at that stage him travelling - he wasn’t well enough to go.”
But after fighting for support so the 19-year-old could continue studying at St Pius X, she said the wheelchair arrived and he was offered a place at University of Ulster.
“In the third week of August he got his new chair,” she went on, “now the pressure sore has nearly healed and he is able to travel.”
After learning he could study for the degree he has wanted to do for years, Marc said he was “a wee bit shocked”.
“That was always the course I wanted to do,” he added, “it’s just a matter of working hard.”
And even though he hasn’t been well for the past few weeks, Marina said he hasn’t missed a day.
“His day starts now at 7am, he’s up and away to university at 8am and then he’s home by 5pm,” she said.
As for his favourite part of the course, Marc said “it’s using coding for software, making programmes and web pages - they teach you how to write code on notepad”.
Proud of all her son has achieved, Marina said she would like to see other children in his position, realise their dreams too.
“I got to go with him for the first few days, they were talking all this computer jargon and as a mummy I was just so proud to see his face and that he understood it - how much he actually knew.
“He gets fantastic support,” she went on. “Catherine from One to One agency is with him and Ryan takes him up in the taxi.
“He’s absolutely loving it - and no surprises he’s getting top marks.”
Now Marina is calling on politicians to have a “major rethink” of the Education Order in relation to “the boys that are becoming men with DMD”.
“Boys with Marc’s condition had an average life expectancy of 12 to 15,” she added, “now they are living way past 18.”