Thirteen-year old Max McGhie suffers from a rare form of the condition called Lennox-Gastaut Syndrome, which means his seizures are drug-resistant.
The teenager, from East Kilbride, had his first seizure when he was just four-years-old, and can now have more than 110 in just one day.
He has to be under constant supervision, and the cocktail of drugs and the severity of his seizures have meant Max’s speech is all but gone.
However, now his mum Seonaid, dad Douglas and 10-year-old sister Charli have joined with friends and neighbours and members of the East Kilbride Community Trust to try and raise £65,000 to send Max to Miami for treatment.
The hope is that his treatment in America will reduce his seizures or eliminate them completely.
During the first week at the US centre, Max will have a variety of assessments, which will determine what treatment he receives in the second week.
The support for the ‘Send Max to Miami’ campaign has been overwhelming, with a boxing night, a gig at the Glasgow Garage, and a swim across Loch Fyne all set to raise money for the schoolboy.
The teenager’s friends have also rallied round, with nine-year-old Kieron Fletcher cycling round Millport to help the cause.
Max loves making noise on his drums and playing football with his friends.
It’s his love of football that originally led to working with the EKCT, as the trust provide pitches for Max’s team.
Mum Seonaid is very thankful for the work everyone has been doing to help her son.
She said: “I genuinely don’t think we would have got any money if it wasn’t for their support, and I’m so thankful for the support we have had so far, it’s very touching and heart-warming.
“If I think about it too much, it just makes me want to cry.”
Seonaid feels that the family have exhausted all their treatment options in this country and that going to America is the only chance left.
She said: “We have tried everything we can in Britain to give Max a better quality of life.
“He’s on five different drugs at the moment, and we’re still in pretty poor control.
“Max received a vagus nerve implant, which is a small box under his arm that is supposed to help us to monitor and control his seizures,
“But as soon as we turned it on, Max passed out for half an hour. It was scary, we thought we’d lost him.”
Monique McAdams, the chief executive of the East Kilbride Community Trust, is also walking the West Highland Way to help raise money for the treatment.
She has known Max for many years and is hopeful more people will get involved and support him.
Monique said: “Anything anyone can do to help is welcomed, whether it’s donations or fundraising.
“Our charity is only five years old, so we are still a young charity.
“But we’re a local charity, and there are people here that know about us, so we want to help raise awareness of Max’s condition, then, hopefully, it will help raise money for Max.
“I really want people to know it doesn’t have to be a big, grand gesture to help, even just a small amount could really make the difference.”
Those who wish to support Max and his family can go to http://www.justgiving.com/East-Kilbride-Community-Trust1