The Walker family are looking forward to a weekend away – at Martin House Children’s Hospice. For they say visiting the hospice near Wetherby is a lifeline for them.
Holly Walker, now 18, was diagnosed with Retts syndrome at the age of two.
The rare neurological disorder affects the development of the brain, so Holly is unable to walk or talk and is dependent on her parents or carers for every activity.
Her family had lived with her diagnosis for over 10 years before they discovered Martin House, one of three children’s hospices in Yorkshire set to benefit from our year-long charity appeal.
Julie, a midwife, was on a professional study day about death in childhood when she suddenly realised the children being discussed were similar to her daughter.
“I thought ‘does this mean my Holly is going to die?”, she said. “I was beside myself and I had to leave the day.”
It was a devastating realisation, but the it led the Walker family to Martin House.
“It was definitely a life changing point for us,” said Julie..
Since finding the hospice, Julie says it has made a huge difference to her, husband Lee and their other children Elliot, 12, and 10-year-old twins Isobel and Phoebe.
“Our experience as a family going to Martin House has been extraordinary.
“We have met lifelong friends, who like us have found themselves caring for our beautiful children who have lifelong battles with ill-health.”
During Holly’s visits, she is pampered with treats like manicures, pedicures and sessions in the spa pool.
The family has also taken part in an “amazing” project through the hospice with Northern Ballet which involved music, movement, ballet and photography.
They’re keen fundraisers and Julie’s latest challenge has been to go on a liquid diet for January, in solidarity with Holly who is fed by tube.
The whole family look forward to weekend stays at the hospice, where Julie and Lee can have a break from their caring responsibilities.
“It’s being able to sleep, to relax and to do things with our other children that we wouldn’t normally do,” Julie said.
“It’s just an amazing place.”