We received a lovely testimonial from Emma, a member of our support group:
“Just over nine months ago we were lucky enough to be awarded a grant by UKIST to fund a GoTo seat for my lovely little boy Jaxon who has battled IS/epilepsy for over 15 months now without ever really gaining control of his seizures. His IS was more than likely caused by a hypoxic ischaemic event he suffered at birth resulting in him being resuscitated for 26 minutes which caused a catastrophic and devastating global brain injury.
At the time of receiving the grant, I promised I would send pictures and a testimonial but sadly since his diagnosis with IS last year Jaxon has struggled to remain out of hospital for longer than a few weeks at a time. This combined with Covid has completely hindered our chances of getting out and about, giving Jaxon the experiences I was desperate for him to have, using his GoTo seat.
He did get to sit at the table on Christmas Day last year, he also gets to sit on the sofa. We have the floor-sitter which means he can also sit on the floor for playtime, however due to his increased tone he can’t do this for long before needing a position change.
For the first time ever last week, Jaxon got to do something I believe every child should get to experience. He got to ride on a swing in the playground. To say I was emotional seeing my little man doing something the majority of his peers are usually able to do with no issues is a bit of an understatement. It really was a truly incredible moment.
This wouldn’t have been possible without the GoTo seat.
To Jenny and all the team at UKIST as well as all the supporters who fundraise and donate to help this wonderful charity support families just like mine, thank you so much.
You gave us so much more than a seat. You gave us the opportunity to enable Jaxon to experience typical activities without his disabilities getting in the way. You’ve given us the chance to make wonderful memories without worrying about Jaxon’s postural needs being met. When this pandemic is over I’ll look forward to taking Jaxon shopping and using his GoTo seat in a shopping trolley. It’s opened so so many doors for us.
So I apologise that it’s taken me so long to get round to writing this and getting some pictures together but I wanted this testimonial to capture the magic that you’ve helped us to create.
Thank you ?”
UKIST grant helps Jaxon to swing!
