The family of a teenager who is receiving palliative care for a rare life-limiting disease are desperate for him to visit his grandparents in Malaysia for the final time.
Sean Tye, 15, was born with Pompe disease, a condition which causes severe muscle weakness and has left him with only muscle movement in his face and thumbs. Sean is on full time ventilation so he can breathe and requires round the clock care from specialist nurses.
The Aberdeenshire teenager is one of less than 200 people in the UK to have the condition.
Sean has only met his grandparents once apart from video calls. Dad Sam Tye, 45, is desperate to make lasting memories with his son and hopes to take him on a once in a lifetime trip with mum Yafen, and brother Aaron, 11, to visit his gran and grandad one last time.
The family have been told the trip would cost £35,000 as Sean requires eight nurses to travel with him, as well as his medical equipment.
Doting dad Sam, an IT worker, says doctors are confident his son will be declared fit to fly for the trip.
Sam told the Record: "Sean requires 24-hour care with at least two people, and help with every single thing in life. We have to resuscitate him every two weeks and it is not a nice thing.
"My parents have only been over to visit Sean once. They are desperate to see him but neither keep in good health. I can't explain how incredible it would be to let him see them again.
"Time is moving on and I want to make the impossible possible for him."
Sean has to travel on a stretcher wherever he goes as he can't stay upright in a wheelchair for long. He is unable to cough or swallow for himself so he requires intense chest management and airway clearance numerous times a day to stay alive.
Sean and his family can attend up to 180 hospital appointments per year in Aberdeen, Glasgow and Edinburgh and Sean requires weekly Enzyme replacement therapy which is the only effective form of treatment for Pompe disease.
The Tye family are discussing travel options with British Airways, Malaysian Airlines and Emirates. Doctors have advised them to plan the trip before or after summer to avoid peak travel times.
Sam is no stranger to fundraising and is determined to make it happen. He said: "Meeting Sean’s medical and physical needs every day is mentally and physically exhausting, and we have no family close by to share this load with.
"We want Sean to experience as much of the world as possible in his short life.
"This trip would give us last memories with Sean and we could finally get our big family photograph together.
"I have been fundraising all my life and I hope we can do this for him."
Donations to the fundraising page can be made by clicking here.
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