For a while she was the youngest person in the UK to be diagnosed wit Rett Syndrome, and we have followed the past four years of her journey on her mum Elizabeth’s blog, Grace for Rett.
Elizabeth couldn’t be at the IRSF Family Conference this year, but she wanted to share her experience of the Upsee with you.
We have only had the Upsee for around 6 weeks, so it’s not much time, but we’ve been using it about once a week for family stuff, particularly when we are going out places. It’s more of a special occasion thing right now, it’s not really been an everyday life thing yet, but it has made the special times much more special.
We took the Upsee to the beach and it was the first time Grace had ever gone down to the water with us. Any time we go, she can’t get down to the sea with us because her chair won’t go over the stones, and so she sits on the outskirts and completely misses out. Needless to say, we don’t go there very often because it’s just too sad to watch her sitting on the sidelines.
So it was the first time she ever actually felt this water she’s been seeing for five years, she actually felt it for the first time on her feet, which was amazing, she was really happy.
We also used it for a music festival day-out with the family, because that would be the type of thing where Grace would normally miss out if she didn’t have it.
There was a lot of room to walk and try it out and she walked a really long way, probably a quarter of a mile, and she smiled the whole way.
Her brothers love it too. There are two things both boys, aged ten and eight, always say about Grace. One is “we want to know what her voice sounds like” but the other is “she can never walk or go anywhere with us”, so the Upsee has really touched them too. It’s really made some of their dreams come true a little bit, and it helps them participate with her better, not just her participating with them so that’s been really good.
We haven’t noticed a lot of physical development yet, but Grace has been in a standing frame since she was one or two and that still hasn’t encouraged her to bear weight, so I don’t hold out much hope that anything’s going to help her legs work.
But she’s happy!
Our litmus test of whether something’s good is if it makes Grace smile, and if it does then it’s good. There are so few things that Grace can enjoy, if something makes her happy she can have it. So she has a TV for watching movies, a swing in the house and her Upsee. These things all really add to the quality of her life and I’m glad she has them.
If a venue improved its changing facilities, would you be more likely to visit it with your disabled child?