A family who have been helped by an “amazing” Yorkshire children’s hospice say being supported by them has changed their lives.
Martin House Children’s Hospice, in Boston Spa, supports more than 550 families a year. It has been nominated for the group award at this year’s Yorkshire Children of Courage Awards.
Julie and Lee Walker, from Badsworth in Pontefract, say the hospice has become a “home from home” since daughter Holly, who has Retts Syndrome, a rare, life-limiting condition that affects the development of the brain, began attending.
But regular respite breaks are not just for the 19-year-old, they are a chance for the whole family to get a break - including younger brother Elliot, 12, and twin sisters Isobel, 11, and Phoebe, 11.
The family were at the hospice this weekend, and attend for short respite breaks around three times a year.
Elliot, Isobel and Phoebe are also part of a support group called Time for Us, which allows them to chat with other siblings of children with life-limiting conditions.
Mrs Walker, 45, said: “One of the reasons we started to come was for them, It’s nice for them to come and be with other children who are in the same situation as them.
“And for me, being here is the only time I close my eyes at night and sleep until the next morning.
“It is quite simply an exceptional place - it’s difficult to put into words what it means to us.”
The hospice believes in supporting the whole family, not just the child or young person who has a life-limiting condition.
Bereavement support is offered to families for two to three years after their child’s death, including to families who may not have had the chance to use the hospice.
Deputy director of care at Martin House, Linda Hedley, said: “We support the whole family, not just the poorly child. When they come to stay, the whole family come, including brothers and sisters. They often have to take second place to the poorly child because their needs are so much greater.
“We stand alongside the family for as long as they need us, that might be until the child’s death, or for quite some time afterwards.”
The hospice is also there so that families can create special memories when they are still together, and therapeutic bereavement groups give siblings the chance to honour their brother or sister with other children who have been through a similar experience.
Mrs Hedley said: “For many of them, the time they spent here together was an important part of their lives, It’s a space that’s familiar to them and one where they feel supported.
“We have far more days of laughter and fun than we have days of tears.”
Grandparents too are helped.
“Some years ago a grandmother said to me, ‘I feel like I’m doubly grieving - I’m lost my grandchild but I am also grieving for my daughter and her husband’.” Mrs Hedley said.
“Once a year we have a grandparents’ day where bereaved grandparents can come and share their experiences together. It’s saying to them, ‘we remember you, and acknowledge that you are grieving too.”
How to vote in awards
Martin House has been nominated for the Yorkshire Children of Courage Awards group award, alongside Follifoot Park Disabled Riders Group in Harrogate and the Sick Children’s Trust, which has homes in Leeds and Sheffield.
Voting is now open and will close the day before the awards ceremony, which will be held at New Dock Hall in Leeds on October 14.
Mrs Hedley said: “This nomination honours not only our staff, who are delighted, but our families and supporters.”
Make your vote and nominate a child for an award at www.yorkshirechildren.co.uk