Jack is a happy five year old, who loves to explore his surroundings, with his hands, feet and his voice – listening to interesting sounds and his echoes, which means he enjoys a good squeal every now and again.

He suffers from Megalencephaly -polymicrogyria -polydactyly -hydrocephalus (MPPH) syndrome, he also suffers from Hyperinsulinemia and Epilepsy, to add to his problems he has also suffered some Brain damage due to a Hypoglycemic episode/seizure. He is registered partially sighted, though he wears glasses and they give the impression he sees more than he actually does.

Jack likes to roll around and has been getting stronger and more confident, sitting up alone, kneeling and even attempting to pull himself into high kneeling against the furniture. This is obviously fantastic for his development and wellbeing, but exposes him to new dangers. Our current home layout is not particularly suitable for Jack now, especially as he has got bigger and heavier. Jack needs to be hoisted more often now for his own safety as well as for ours.

Our home adaptations are costing far more than the disabled facilities grant because our home lacks the layout and space in the bedroom and bathroom for the equipment he requires and the minimum space set by regulations for turning and carers to be present.