Mum Karen, talks about her `happy and cheerful young man’ and how much the family are supported by Demelza.
Steven Latamsing was born on 4th February 1997. He was not given much hope as he was born with blue lips, fingers and toes.
He also had a hole in his heart which was operated on when he was a few months old. The surgery was a success but very traumatic and his chest was left open for a few days.
Steven had many operations to remove growths in his throat and he had a tracheotomy in his neck to help with his breathing which prevented him from talking. He had it in for nearly all of his life. He seemed to bounce through every operation that he had, he amazed us all the time.
Steven never ate a proper meal but he enjoyed what he did eat – yoghurts, biscuits, crisps, Battenberg and anything that could dissolve in his mouth.
He got all his nutrients from a special milk feed through a gastronomy tube in his stomach.
Steven also suffered from curvature of the spine so he wore a spinal body brace. He could not walk and used a wheelchair to get about but at school he was involved in a move programme and was doing very well.
In recent years he had cysts in his spinal chord and he had shunts to regulate the fluid. He was also diagnosed in the last five years of his life with rubinstein taybi syndrome which is a genetic disease characterised by broad thumbs and toes.
We had to make sure he had a suction machine, his emergency bag and his feeds with him at all times.
Regardless of all his medical conditions and disabilities Steven was always a happy and cheerful young man. He always had a smile on his face, nothing got him down. He was a character.
Steven enjoyed and looked forward to going to Demelza hospice in Eltham. He enjoyed the break as much as we enjoyed it. He would not go to bed until late and particularly enjoyed messy play.
For me I got to sit down and read the paper or do something with Steven’s sisters, Lily, Francesca and Bette-Sue. I could give them more attention.
Lily also enjoys coming to the siblings groups and has taken part in play therapy.
Lily doted on Steven, whenever he was in hospital she worried about him. The sibling support helped give her a sense that she was not the only one with a brother or sister with special needs.
Steven passed away quite suddenly on the 12th June 2011 at Demelza surrounded by family, friends and carers. His funeral was at Eltham Crematorium – led by Rev Steven Hill who christened him.
Since Steven has died we have attended the bereavement weekend, organised by Demelza and did some creative work. It was good to talk to other families in the same situation. My husband and I are having counselling and I am going to do some art therapy.
It’s quite hard some days. Without Demelza’s help I probably would have gone under. I would have struggled , it would have been a lot harder