William has faced challenges since birth after he experienced a suspected stroke in the womb and was born prematurely. This meant that he was not able to communicate verbally and was fed through a feeding tube directly into his stomach.
Despite these challenges, William’s happy personality has always shone through, and he led a happy and active life. Before his brain injury, he was thriving at a special needs school and his favourite hobby was climbing.
A huge shock
Then in April 2023 William experienced a prolonged seizure overnight.
Mum Michelle tells us: “He has epilepsy, but he’d never had a bad seizure like that.”
William’s dad Paul continues: “It was during the night, so we woke to hear that something wasn’t right. We went to check on him and saw that he was having a seizure.”
William was taken to Sheffield Hospital where his parents were told that he had kidney and liver failure and that he had gone into cardiac arrest. He was intubated and unconscious for ten weeks, and his parents were told that if he didn’t start improving, they would have to think about end-of-life care.
Fortunately, William’s condition stabilised. But the effects of the seizure were severe.
“He had just lost absolutely everything... We are lucky that he’s here.” Michelle
Turning things around
After an extremely difficult eight months in hospital, William was referred to The Children’s Trust for residential rehabilitation.
Michelle tells us how, on arrival, they finally got the information they needed to support William: “We never had the neurologist sit down and speak to us in hospital. When we got to The Children’s Trust, we had a meeting with the doctors and received brain injury education training."
Michelle continues: “They explained to us a bit more about what had happened – that the whole of his brain had taken a hit this time and it was a big thing that he had gone through.”
Support for the whole family
His parents were delighted to have the opportunity for William to have rehabilitation at The Children’s Trust, but it was a huge adjustment.
Michelle explains: “I had become quite independent while we were in hospital. I did everything for William there – we didn’t even have a hoist, so I was lifting him myself. Then we came to The Children’s Trust and they said, ‘we’ll help you because we need to look after you too’.”
William was supported with 24-hour care and medical support. After initially feeling overwhelmed, Michelle and Paul were able to talk through their concerns with staff. Gradually their trust grew and soon Michelle felt confident enough to let the staff take over.
Michelle says: “I just wanted to switch off and be a mum for a bit and go to therapy with him. That’s a huge thing for me to let go of that because I’m normally very in control, but I said, ‘I’m going to let them do it because I need to just be his Mum’.”
A special bond
A really important step in this process was to work on communicating with William.
Michelle explains: “Communication has always been a massive issue with him. He’s never talked, and eating has always been an issue and it’s something that’s very difficult to get help in the community – for us it was about finding a way for him to communicate.”
Abbi Songhurst, Highly Specialist Speech and Language Therapist, worked with William to find an accessible way for him to be able to communicate.
A huge breakthrough was teaching William to use switches to communicate ‘yes’ or ‘no’. It took time for him to learn, but with repetition and rewards such as his favourite song or cartoon to motivate him, William made great strides and is now confidently using them to communicate his decisions.
William has also made improvements in gesturing and nodding for ‘yes’ or looking away for ‘no’ and has started vocalising for certain words.
Michelle tells us: “He plays games where we say ‘ready, steady’ and he says ‘go’. We’ve even had a ‘ma’ for Mum. It’s huge.”
“He’s now excelling more than he ever was, and that’s because of the input that he has here. Because of Abbi, he’s communicating.” Michelle
“He said he didn’t want to paint today and that’s important; that’s him making a decision and being independent and that’s all we’ve ever wanted. It’s what I’ve always said was in him to do.”
Going home
To prepare to go back home at the end of the placement, William’s parents have had to have adaptations made to their home and get support in place for his therapy and education.
Michelle tells us how they have had support every step of the way from staff at The Children’s Trust: “We’ve had a lot of paperwork and meetings and the support we’ve had has been almost overwhelming at times. The staff sit down and help us with it, they’re brilliant.”
Despite these challenges they are excited for the next step in William’s journey.
Paul says: “We want to get into a routine at home and start being a family again. It’s been a year away from home all of us together, it’s a long time. We just want to be back home and be a family.”
And the future is bright for William.
Paul shares: “The difference between how he got here and how he’s going to leave is like night and day.”
“We feel lucky that he has had a placement at The Children’s Trust, and they’ve tapped into something that I always knew was there. We just needed to find a way to open up those gates and we’ve been shown that.” Michelle
Michelle continues: “He’s not reading books or telling massive stories, but he can answer ‘yes’ and ‘no’ and say ‘go’. And that’s massive.
"That’s just the beginning. And it’s thanks to the staff here.”
Reflecting on their time at The Children’s Trust, Paul tells us: “People need to be aware of this place and what it does, and how inspirational these kids can be when they’re given the right support.
"We’re thankful and forever grateful that we’ve had this chance for William. We feel very privileged.”
