A LIFELINE OF CARE

Abigail (14) has Holoprosencephaly (HPE), an extremely rare condition which affects just 1 in 170,000 children. “There’s no underlying cause for it, and nobody could have predicted it. It was just that a gene mutated and got copied incorrectly,” explains mum, Diana.

“The first thing we noticed when Abigail was born was that she has a very small head - she’s got microcephaly,” continued Diana. “The doctors then found that she had a tongue tie and cleft palate. She was two and a half weeks old when we found out she has HPE.” At nine months old, doctors discovered Abigail had a huge scoliosis (a curvature of the spine), fused ribs and abnormal vertebrae, for which she has now had about a dozen surgeries. From about three and a half years old, she has been fed through a tube into her stomach.

“It makes a huge difference having Julia’s House around to support us. They have been a lifeline,” shared Diana. “It gives Mark and I time to spend with our son, Daniel, because that’s difficult to do when you’re sorting out feeds, medications and showers.”

“Daniel also enjoys spending time on his own with his Julia’s House Sibling Worker - he refers to her as ‘that lady that comes round for me’. He has started to form relationships with other siblings in similar circumstances, which wouldn’t be possible if it wasn’t for Julia’s House.

“The first time the word ‘hospice’ was used was when she was really poorly and spending a lot of time in hospital. You automatically associate that word with end of life, but I now know that a children’s hospice is a fun place, it’s a home-from-home.”

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“The first time the word ‘hospice’ was used was when she was really poorly and spending a lot of time in hospital. You automatically associate that word with end of life, but I now know that a children’s hospice is a fun place, it’s a home-from-home.”