Help Sean to visit elderly grandparents overseas

Sean is a teenage boy who has a life limiting condition called Pompe Disease, which causes severe muscle weakness and has a very short life expectancy.

Sean has no movement in any large muscle groups, which means he can only use the muscles in his face and thumbs.

Sean is fully dependent on specially trained and highly skilled nurses to provide palliative care, and is completely dependent on a ventilator to breathe 24/7. Sean doesn’t have the muscle tone to cough or swallow for himself which means he needs intense chest management and airway clearance multiple times per day just to stay alive and means his current condition is very unstable.

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, which is why we want to get him to Asia where our family are. Sean has not seen his grandparents in over 10 years. Sean’s grandparents live in Malaysia and are now too elderly and frail to travel. They would really like to see Sean one last time and we want to make a once in a lifetime trip to visit them.

This trip would benefit our whole family, and give us lasting memories with Sean.

The total cost of the trip is huge with the additional costs to get Sean’s medical equipment and specially trained nurses overseas with him. Our current target is £3,000 but we we will need to set new targets as we progress with planning.

Please help us to make this trip possible!