A SERIOUSLY ill boy is getting into the festive spirit with his brothers and sisters with an extra special trip to see Santa onboard the Santa Bus.
Tommy Thompson, 11, has always enjoyed watching the colourful and brightly decorated bus when it arrives near his home as part of its annual tour of Brighton and Hove.
Now the youngster, who suffers from an incurable and exceptionally rare degenerative condition, is getting a one-off chance to go and see the bus for himself before it sets off on its journey tomorrow evening.
The youngster from Hove will be joined by his brothers Oliver, nine, Ashley, seven and Charlie, two, and sister Emily, four, for the treat.
Mum Gemma, 32, from Hove, said the family were really looking forward to the trip.
She said: “They are just so excited. They always love seeing the bus and it is always great fun.”
Tommy is one of fewer than 150 children in the UK living with Sanfilippo syndrome.
This is a disease caused by the lack of an enzyme that breaks down complex sugars and leads to them building up in the brain and other parts of the body instead.
Tommy's condition has gradually worsened as he got older, and he no longer has the ability to walk, talk or eat for himself.
Mrs Thompson said: “He has always reacted well to seeing the bus. He likes the size of it and all the lights.
“For the last two years the bus route has meant it has turned off just before it reaches our house and I have literally ended up chasing it and persuading it to come back past our house so he can see it.
“This year I saw we weren’t on the route at all. Tommy has recently recovered from pneumonia so I couldn’t really take him out far from the house late at night.
“I got in contact with the organisers and they offered to let the family come and see the bus for themselves for a special visit instead.
“It is absolutely lovely and this way we all get to see it together as a family which is the most important thing.
“Despite his problems, Tommy is still a happy and smiling boy and very content. This will be such a great treat for him.”
The Santa Bus is travelling around Brighton and Hove to raise funds for The Argus Appeal and the Martlets Hospice in Hove.