Aim to raise Â£8000 to improve life of wheelchair-bound Sam

Team Sam: Jacqueline Higgin and Sam with carers Jannet Smith and Shannon Smith. Picture: Ian Georgeson

The youngster spent six months of his early years at the Sick Kids hospital and was diagnosed with Dravet Syndrome – a rare and severe form of childhood epilepsy.

Since then his childhood has been swamped with mental, physical and developmental disorders including autism, bipolar, and scoliosis which has left the now 24-year-old bedridden.

The former Ross High pupil’s movement has diminished, leaving him wheelchair bound at the age of 14 as a result of his daily seizures.

Sam now has the help of two carers during the day, while just one carer works through the night. His mum Jacqueline Higgin, 52, takes on four of those nights herself at their Ormiston home.

He can suffer multiple seizures most nights which can cause him to pass urine and currently one person is unable to change him and his bed sheets which leaves Sam vulnerable to bed sores and cellulitis, which endangered his life in the past. The family has now launched a JustGiving page to raise £8,000 for a life-changing bed with an automatic patient turning system for Sam so the overnight carer will be able to change his sheets.

She said: “When Sam was a baby it was traumatic beyond belief. He almost died three years ago too. We were very lucky that the cellulitis was caught early. He spends so much time in bed and we need to make sure he is safe and in less pain. It would mean the world to us to have this bed and technology.

“Cleanliness is a huge thing and it will reduce the bed sores and hopefully he will never get cellulitis again.

“With only the funding for one carer on a night, they are unable to lift Sam and get him changed and change his sheets. This means he is lying in urine sometimes for hours and hours which is really sad. So this technology would go a long way into solving these problems meaning one person could do both.

“When you have a child all you want to do is protect them.”

Jacqueline gave up her support worker job at East Lothian Council nine years ago to become a carer for her beloved son. She has the help of a committed team of six carers who left their jobs to care for Sam with them all now being part of an extended family.

The Disney fanatic enjoys nothing more than watching his favourite films, chasing trains and collecting his Henry Hoovers. Jacqueline joked: “I dread when a new one is released.”

She added: “For me it has been hard work but very rewarding. He is an exceptional human being. He just gets on with things and is so positive. I always feel that if he can keep going then so can I.

“This technology would make such a huge difference to us all but ultimately to Sam so he is more comfortable and safe.”

You can donate online at www.justgiving.com/crowdfunding/team-sam-1