InXpress Gives Back enable a child to embark on therapy

19th December 2023

If you’re a parent, you know how wonderful the arrival of a new baby is. But for William Burns’ parents, the joy soon turned to worry and heartache, when there were complications at his birth. His mum, Charlie, explains: “As soon as he was born, William was whisked away to NICU, but after 3 weeks we still weren’t sure what was wrong with him. He was completely floppy and he failed the initial tests they do on all newborns, but no one could tell us why. He also sustained significant injuries at birth, resulting in a big bleed on the back of his head.  This was all during the 2020 lockdowns, so everything was limited and restrictive, my husband was sent home and I was separated from my baby with no answers.”

After seven months, William’s parents finally received an answer. “It’s to do with the RYR1 gene,” Charlie says, “which is related to muscle function. For William, although his brain is sending the message to move, it's not transmitting to the muscles effectively.  He has severe hypotonia, which simply put means his muscles are extremely low tone. The consultants know so little about this gene, most have never even heard of it, and very early on they expressed their view that we should “adjust our expectations for his life” – thankfully something that we immediately chose to ignore.  From the moment he was born, we asked what we could do to try and help him gain strength to try and overcome his difficulties, and the only answer we were given was physio.  So we searched for qualified, experienced physiotherapists who could help William build strength and try to achieve those vital gross motor milestones.”

Recently, through family friends, Charlie and William’s dad Tom came across The Neurological And Physical Abilitation Centre (NAPA), which offers individualised, intensive therapy programmes tailored to a child’s neurological and developmental needs. “Friends of ours were taking their little boy to the NAPA Center in Boston, USA and we have been avidly watching the progress he has made there.   When we heard that they would be establishing a new centre in London, we were absolutely overjoyed. We were really excited about the prospect of what this type of cutting edge therapy could do for William. He is a phenomenal little boy, and all we want is to do our best for him, and give him the opportunities the rest of us take for granted.”

It was in conversation with her neighbour, Stuart Vant, Charlie realised the future was about to change for William. “Funding the prospect of William going to NAPA was a big thing and we needed help. So, I was looking to speak to our local Round Table, and other community groups for help. In passing, I mentioned it to Stuart, and he immediately said, ‘leave it with me, I have an idea!’. The next thing I know, he and Glenn from InXpress are contacting me about funding sessions for William for almost a year, giving him an incredible opportunity to develop his independence.  It feels amazing that our family has been given this opportunity to give our beautiful son the best treatment available, and he is absolutely thriving in the three sessions he’s had so far.  It honestly feels like a dream.”

Once a week, William and Charlie meet with his specialist therapist, in the NAPA playroom. Together, they run through a series of play activities, all designed to build strength in William’s muscles in order to overcome his low tone, whilst giving Charlie an understanding of why they’re doing each activity for him. “William absolutely loves it. We were asked what our goal is for him; it’s independence.  He’s a typical three year old who wants to do all the things his friends do, but at the moment, he can’t. So, it would be amazing to see him sit-up by himself, stand-up by himself, or even climb out of bed. They seem like small things, but would be incredible achievements for William, giving him a sense of independence, confidence, and improve his overall wellbeing.”

William and his parents are on a journey of highs and lows, but thanks to InXpress Gives back, for the next year they know they’re in the best therapeutic hands. “We’re so thankful NAPA opened in London and feel so lucky, thanks to the kindness of InXpress, to be able to take William. This will absolutely change his life, without doubt, and for that we will be forever grateful.  Thank you.”