William's Story - Update

In 2019 we shared the story of William, a sociable and fun-loving little boy who was born with the arteries of his heart the wrong way round. After emergency surgery at just one day old and open heart surgery a week later, it became clear there were yet more problems. William did not progress as hoped and expected; his parents noticed he was very floppy and had no control over his movements.

By the time William was a year old he was still unable to sit unsupported and wasn’t using the right hand side of his body. Then at 16 months his family was told the devastating news that William had sustained brain damage due to a complication arising from the surgery. Shortly after, he developed severe, uncontrollable epilepsy, which caused secondary brain damage. He experiences terrifying seizures on a daily basis.

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William lives at home with his mum Tania, Dad Pete and ‘little big sister’ Eleanor, age six.

“William is 12 now – in a different life he would have started secondary school this month,” explains Tania. “His global developmental delay impacts every aspect of William’s life, his access to the world around him, and how he interacts with the people he loves. It leaves him with no verbal communication and very limited ways to communicate beyond basic emotional responses and physical gestures such as reaching for something or turning his head away from something he does not like. He likes to be out of his wheelchair and to explore with freedom - but his mobility, co-ordination and continued growth make this tough for him. Despite this William never gives up and moves about whenever he can; he can sit on the floor to play with his favourite noisy toys, and on good days can take a few steps with support.

“Having Julia’s House in our lives allows me and Pete to be parents, not carers, and to enjoy time with William beyond his care and medical needs. They provide us with a constant point of contact for support and advice and offer William a range of activities that extend his experiences and enjoyment.

“It also gives us time to focus on William’s little sister Eleanor and give her the precious time she deserves and wants. On the days William visits the hospice she can have our attention and love without interruptions. Eleanor has really enjoyed attending the Julia’s House sibling events, which also help her to feel special and included - she is already asking if there will be another ball at Christmas!

“As a family, Julia’s House supports us in so many ways. Their complementary therapist has magic hands, and is always willing to listen or offer gentle advice on the small things that can help improve our health and wellbeing. Melissa, from the Family Support Service, has been a real advocate for William's needs and has championed charity support for much-needed equipment and things that will increase the enjoyment in his life.

She assists these processes by chasing companies, reminding us what we need to do and keeping things moving - things we struggle to do being full time working parents. And of course, to have William’s nurse Jen checking in on us is reassuring and sometimes needed more than we realise.

“We don’t want to think about not having the support of Julia’s House and dread the day William has to make the transition into adult support services. We will miss knowing someone is there if we need them. That thought has more power than I can explain. Without Julia’s House, I feel the daily demands of medical needs, emergency care, limited sleep, and no time to breathe would become overwhelming and threaten the balance we hold on to so desperately.”

Other case studies

Addy's past year

At Christmas last year, we shared with you the story of seven-year-old Addy and her family. Addy appeared to be a very healthy little girl, who loved

James' Story

James has a rare form of cerebral palsy. Now aged 15, James can’t walk and communicates only with eye gaze and sounds (including lots of laughter!)

William’s default setting is to giggle

William (8) has a rare neurological condition called Pelizaeus Merzbacher Disease (PMD) - signals to and from his brain get confused impacting William

Julia's House has a CQC 'Outstanding' rating (Feb 2023), ranking us in the top quartile of all hospices in the UK. Click here to read the report.