THE word ‘hospice’ can have negative connotations – all of which are shattered the moment you walk into Ty Hafan, the hospice of Wales, as EMMA MACKINTOSH found out when she met the Hard family there to highlight Children’s Hospice Week, which starts today.
THE Hard family from Newport have had more than their share of challenges in the past two years.
Not only has 34-year-old Anthony, an aircraft engineer in the RAF, undergone brain cancer treatment twice, but along with his wife Nahella, 33, and nine-year-old daughter Reagan, the family have been looking after their newest addition, Casey.
Born on November 9, 2011, Casey was left brain damaged after a traumatic birth at Newport’s Royal Gwent Hospital and now lives with damage to his right cerebral hemisphere and his left frontal lobe, relying solely on his brain stem to function.
He has been diagnosed with severe epilepsy, cortical visual impairment, cerebral palsy and spastic quadriplegia and needs specialist equipment to keep him as comfortable as possible when he suffers spasms, seizures and cramps.
Before having Casey, his parents had only heard of the hospice Ty Hafan, established in Sully near Cardiff in 1999, through seeing the logo on fundraising tins.
Now the family use the hospice regularly, and Mrs Hard said she could not imagine what they would have done without it.
“Before we had Casey, we didn’t really take any notice,” said Mrs Hard.
“We didn’t know what to expect because when we thought of the word ‘hospice’ we just thought of death.
“The paediatrician referred us and staff came to visit us first at home, and explained what it was all about.
“You have to know a hospice means what it means – you can only come here if your child isn’t expected to live to adulthood,” she said.
“Then the decision goes to a panel and it was approved, and we came down not long after. When we came for a visit we said instantly, ‘this is lovely’. It’s full of life, not end-of-life.”
Since opening in 1999, Ty Hafan has provided comfort, care and support to more than 500 families.
Mrs Hard was able to bring Casey to the hospice for several weeks when she found herself struggling after the tot was put on a feeding tube.
“When you’re in hospital, you can be in one room for a long time,” she said.
“Casey doesn’t sleep because his brain doesn’t make melatonin, but after a seizure he will sleep really deeply for up to five hours, goes really cold and pale and his breathing is really shallow, then when he wakes up he will cry.
“Here there is a trained person to meet his needs, and they also kiss him and cuddle him and play with him,” she said.
“The staff love Casey and make it known to us. He is very tactile and he likes feeling close to people,” she added.
“There are four link nurses, so he’s with them if they are on shift, but he’s used to everyone now.
“They are really aware of everything he needs and they try to keep in contact with us even when we are not here, like they send him a birthday card.
“You always feel like they are thinking of you. You’re not just a number.”
The family paid a visit to the hospice last week because Mr Hard is starting radiotherapy to treat a second bout of brain cancer.
“You meet lots of people here and you talk about things, so you don’t feel alone,” said Mrs Hard.
“The staff are great and I do end up having long conversations with them. Upstairs there is a family room and a complementary therapy room, so you can actually get away and you don’t hear them crying in the night.
“Casey doesn’t always have the same room, but the staff make sure it is specially decorated for him and they include a star projector because he can’t see very well.
“Soon there will be a hydrotherapy pool which Casey will love because he loves splishing and splashing around in the bath,” said Mrs Hard.
There are no visiting hours, relatives can come for Sunday lunch, and siblings are a high priority for the staff as well.
“Reagan our daughter thinks it’s a holiday camp, she always makes friends downhere and the other siblings are going through the same thing Reagan is,” said Mrs Hard.
“We can come here until Casey is 19. When he was born we were told that part of his brain is not there and the other half is full of holes, leaving only a brain stem.
“He is more than just a brain stem.
“He feeds orally and that’s a lot – he loves flavours, it’s a bit of normality and we don’t want to take that away from him.
“He has only had one chest infection in his life time. He is never going to be able to walk or talk, but he is big, you can see he is supposed to be a toddler.”
The one thing Ty Hafan needs is more publicity, said Mrs Hard.
“We have a friend who won’t use it because it’s a hospice, but if you go down and see it you will feel so differently,” she said.
“I can’t imagine what it would have been like without Ty Hafan.
Iam somuch more relaxed when I’m here. You can speak to any parent that comes here and they will say the same thing.”
Mr Hard said: “My dad didn’t want to come at first, but when he was down here and saw it...
People have that stereotypical view, but with visitors they never say no.
“We have had masses of family down here and no one ever says anything.
“It’s not just for the children that are here, it’s for everyone.”
Superhero-themed fundraiser at schools SCHOOLS in Gwent will be holding superhero-themed fundraising events to raise cash for Ty Hafan during Children’s Hospice Week (April 26 to May 3).
Culminating with Superhero Friday, the week celebrates the vital work of children’s hospices across the UK and the school which raises the most will win £250, donated by Western Power Distribution, to spend on equipment.
Ty Hafan is also appealing to businesses, groups and individuals to organise fundraising events during the week.
Everything from wearing superhero costumes in exchange for donations to sponsoring a hero for an hour could help, and all money raised will go towards helping children and families make the most of their time together.
To find out how to support Ty Hafan during Children’s Hospice Week, visit tyhafan.org or call business and community fundraiser Alison Stallard on 07787 283719.
Golfing fun and music give boost THE family are now waiting for Casey’s Cause – a fundraising initiative to pay for specialist equipment which their son needs – to be given registered charitable status, so they can help other children and those with disabilities other than cerebral palsy.
On May 17 there is a golf day at Greenmeadow Golf Club, Cwmbran, in aid of Casey’s Cause, organised by Albion Rovers, and on May 10 and May 26 there are two indoor music festivals at Newport’s Meze Lounge and Mojo Lounge.
Funds are still coming in from a 5km fun run organised by friend and former neighbour Claire Hutchison, with the total expected to be around £8,000.
They have recently been able to install air conditioning in Casey’s bedroom to help him regulate his body temperature, and this week received a specially-made bed for Casey.
Visit facebook.com/caseybears cause for more information.