Nate and Rachel’s story Nate is 10. He’s a happy, lovely little lad who loves music, Disney and The Avengers. He’s always on the go, walking the dog with the family, supporting his sister at football or splashing about at hydrotherapy or swimming. He has an extremely rare genetic condition and since birth we haven’t really known what to expect. Nate wasn’t diagnosed until he was nearly three and in those early years there was a lot of uncertainty. No-one who was involved with Nate knew what the future held and this had a big impact on what equipment he accessed and his care. In the beginning the focus was purely on survival. We had no idea then of the impact of postural care, nor how important it would be for him.
“Living in a dynamic risk assessment” Our goal every day is for Nate to have the best quality of life he can possibly have. We definitely take some risks to enable Nate to have those experiences that other children do – sledging being the most recent example. It’s like living in a constant dynamic risk assessment. If we go on holiday as a family, we have to think ‘where’s the nearest hospital?’, ‘what can we access when we get there?’, ‘where can we change him?’, questions that other families don’t need to think about. Personal care on a long journey is still a huge challenge: although there is a gradual increase in service stations that have Changing Places facilities, they do seem to be predominantly in the south. It was always really important to us that we would still be able to do things as a family; but we have to be creative about how we involve Nate in all of that. Everything is planned to the letter. 25
