“You don’t know how important a children’s hospice is until you need it, until you are thrown in to the whirlwind of having a poorly child.”
Paul and Angela Hunter never imagined needing a children’s hospice, but when their little boy Jude was born they knew something wasn’t right.
He would have uncontrollable seizures that terrified his parents – he could have up to 15 a day. After months of testing, Jude was diagnosed with a condition called D-Bifunctional Protein Deficiency. He regularly needed oxygen, was fed through a tube, required numerous medications and his condition affected his eyesight and hearing.
That’s when the family were introduced to Claire House Children’s Hospice.
“At that point, we didn’t believe it, we hadn’t registered the severity of the situation and were confused as to why we would need a children’s hospice.”
Throughout Jude’s life, the family would go and stay at the hospice regularly where nurses were on hand to support the family with medications and feeding and included Jude in lots of wonderful activities whether he was in the art room drawing pictures of making lots of noise in a music session.
“Jude loved the bath, we’d swish him around and he’d look at the lights. He liked sensory things so spending time in the light room and the hydrotherapy pool was something he loved.”
“You imagine a hospice to be clinical and sad but it isn’t, we fell in love with the place. At Claire House we knew Jude was getting the best care and they helped us to create so many memories.”
At 15 months old, Jude passed away. His parents wrapped him in a blanket and cradled him in their arms as they made their way to Claire House one last time.
The family were given the space and time they needed to say goodbye to their precious boy – where they could be with him 24 hours a day with music playing and his teddy’s all around him.
“It was perfect to have privacy in a lovely tranquil setting. We could have our family visit and we could sit out in the garden.”
“Claire House was our sanctuary, our happy place, without them there would have been a void.”
Children’s hospices like Claire House provide vital support for children and young people with a life-limiting or life-threatening condition. Show your support #ForTheChildren this #ChildrensHospiceWeek.