William has a very rare condition which means he has very limited mobility, unable to walk or even sit unaided with little use of his hands. He has to be fed through a gastrostomy tube and he is non verbal and faces daily seizures.
As he gets older and larger, meeting these complex needs requires increasing amounts of equipment to manage his needs and us caring for him safely. He needs specialist hoisting and a bathroom that allows us to keep him clean which is already very challenging for us, this is critical for his gastrostomy care and made all the more difficult as he is incontinent and vomits frequently with seizures. William has multiple seizures throughout the day and night requiring intervention with rescue medication, as such we need to be close to him to respond to his seizure monitor. To do this we need a lift to the new bedroom which will allow us to be next to his room, if we are not already sleeping in his room if he is having a particularly bad period of seizures.
We hope that the space we create with this project will meet all of the needs William has both now and long in to the future. The project scale and cost is very daunting for us but it is fundamental for William and for us as a family.
William has a very rare condition which means he has very limited mobility, unable to walk or even sit unaided with little use of his hands. He has to be fed through a gastrostomy tube and he is none verbal and faces daily seizures.
Through all this William manages to show us his incredible character and personality in any way that he can. Those moments are priceless to us as a family. He is getting bigger all the time and we now struggle to move him about without hoisting and especially with the stairs and washing. We need large adaptations to his home so we can live and care for him in a safe and comfortable environment for hopefully many years to come.
William loves to be outside and makes this known by singing a unique mix of squeals and squarks and occasional clicks from his tongue. We try to get him out for walks (and runs although he is getting very big on the hills) and let him experience as much rich sensory world that outside space has to offer. He has a little sister who plays with him and is slowly understanding how William is different and what that means which is great for them both (most of the time).