William’s Story

William Carlson has faced many complex medical challenges since birth.

The 11-year-old has a brain malformation called Lissencephaly, while scans have also shown Dandy Walker Variant (meaning his cerebellum is not properly formed) and Agenesis of the Corpus Callosum (meaning the two halves of his brain are not properly joined together).

He has complex epilepsy, cortical visual impairment, is profoundly disabled with multiple learning difficulties, is gastrostomy-fed and has complex respiratory needs.

William lives in St Ives with mum Helen, dad Steve and sisters Eliza, eight, and Cecily, three.

Helen said: “William has a 24-night-a-year package of care at Milton.

“Due to his complex needs, he requires nurse-led care for overnight respite and nowhere else in the county could provide that. He stays at the hospice approximately three nights every six weeks.

“It gives us a break and allows us to do things with our girls, as getting out and about as a family is incredibly challenging and often impossible.

“Last time we went to Colchester Zoo for the day, and the time before that we went to Wickstead Park.

“Eliza accesses the sibling group and activities, and we try and attend as many of the social, fun activities as possible.

“Steve and I also access the wellbeing service, which has proved so helpful as the team there understand the complexities of life around a child with such health needs.”

William was also diagnosed with type one diabetes when he was five, completely unrelated to his other conditions.

Helen describes his hospice stays as “invaluable”.

“It’s so important to us that he receives a high standard of medical care, from people who care about the children they are looking after, and we certainly get this at Milton,” she said.

“William is able to do fun activities such as arts and crafts and use the sensory room when he’s there.

“Both our girls love spending time at the hospice and this is also really important to us.

“Our hope is that William’s end-of-life care will be at Milton, so it’s good we already have strong relationships with the nurses and carers there and that it’s a place familiar and fun for our girls.”

The Carlson family recently met The Duke and Duchess of Cambridge during the Royal couple’s visit to Milton.

Published in July 2022

Families’ stories and experiences are unique to them and we have been kindly granted permission to share this family’s story. If you have been affected by what you’ve read or have a question and would like to talk to someone, please contact your local children’s hospice service or Together for Short Lives, the UK charity that supports families caring for seriously ill children (tel: 0808 8088 100). 

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