The word ‘Hospice’ has certain connotations - mostly that of end of life care and the admission of patients who are very seriously ill.
But according to local families a hospice can also be a place where they can step away from the worries and stress of providing 24/7 care for their children with complex medical needs and where they can simply enjoy being a family.
The Northern Ireland Children’s Hospice currently helps more than 70 families from the wider Derry area - and for those families, the services offered at the Newtownabbey facilitiy provide a lifeline.
Martin Crossan, who is chairperson of the North West Community Support Group said the facility allows him to do things with his family which he simply cannot do at home.
“Our daughter Summer is eight and a half,” he said. “Summer was born with complex medical needs - including developmental delay, epilepsy, a heart murmur and neurological difficulties.”
The nature of Summer’s condition is such that Martin and his partner Fiona must provide care for their daughter around the clock. There is simply no such thing as a day off - and while Martin refers to his daughter as “a princess”, dealing with such an ill child obviously places strain on a family.
“We might not have a formal diagnosis for Summer, but her condition is life threatening. Getting out - getting a babysitter - is just not possible. Having time for our other daughters (Roisin is 14 and Molly-Sue just 4) is difficult.”
A few years ago the family were asked if they wanted to make use of the hospice services. “I was initially very nervous,” Martin said. “To me, when someone says hospice, you tend to think the worst. So we were nervous - but we shouldn’t have been.”
A trip to Horizon House allows the entire family to spend quality time together in dedicated family accommodation.
For Summer it is a chance to receive quality medical care but also to enjoy being a child. “She loves it - she loves the hydroptherapy pool, the sensory room, all the facilities. And the staff treat her like the princess she is.”
And for Martin and Fiona, and their two other daughters, it affords them time to “relax and recharge their batteries”.
“The last time we went I don’t think we saw Summer all that much,” Martin said. “We used the time, knowing that Summer was being looked after as well as she would be at home, to spend time with her our daughters. We went to Newcastle for the day, to the Zoo - things that we just don’t normally have the time to do. And we know that while we are out having that time together, Summer is having a blast.”
For Louise James and partner Sean McGrotty having time together as a family - away from the pressures of housework and homework - is what makes their trips to the hospice so important.
They are parents to 7 year old Evan - who was diagnosed with Duchenne Muscular Dystrophy when he was three. The condition is progressive and life limiting - and understandably has had a devastating impact on the family and on their older son Mark who is just 10.
“Evan loves every minute of our time at the hospice,” Louise said. “He is always asking when we are due to go back up again.
From the moment we arrive the boys are spoiled. The word ‘no’ is never mentioned the whole weekend,” Louise laughed.
“We go there to relax. It’s such a relief not to have to worry about homework or the housework. Evan loves it. He can just come up and cuddle with me on the sofa and I never have to tell him that I’m too busy or have to see to something else.”
Louise says the weekends at the Hospice allow Evan the chance to “just be a wee boy”.
“He can meet other children, he can go outside and play and know there will be someone who knows exactly how to look after him.”
And for both Evan and big brother Mark the hospice helps them to prepare for the future.
“We see other children in wheelchairs - which is good for Evan because he will eventually move to a wheelchair himself. While that will still be scary the process has helped us normalise it for him and for Mark. Now he doesn’t necessarily the see the chair - he sees how cool the wheels have been customised or the like.”
Louise and Sean are aware times are tough for people - and asking for support for a charity, which relies on £2.5 million of fundraising to keep open - is asking alot.
“But as we see it, it’s not just our child. It’s everybody’s child. If we didn’t have the Children’s Hospice where would we get the help we needed.”
To find more about the Northern Ireland Children’s Hospice or to offer support then visit www.nihospicecare.com