Jenson was born healthy or so we thought, but aged 2 and a half it was apparent he had problems with his vision. He went blind within six months and we were told he had an eye condition but needed more tests.
Jenson then started having drop seizures and after tests we were given the devestating batten diagnosis. Jenson is now unable to walk, cannot talk, has seizures, gastrostomy fed, has a movement disorder, his hip is out causing a lot of pain he can not even hold a toy any more.
He gets a lot of pleasure from watching his favourite Thomas and friends on tv and I love getting Jenson out and about even though it's getting harder as he doesn't tolerate his wheelchair for long due to pain but we are trying to get on top of that with support from Helen house hospice.