His condition means he needs 24-hour care and it’s unlikely he will ever be able to walk or talk, placing a huge strain on the whole family. To add to the family’s problems, Casey’s dad, Anthony, is battling a brain tumour for the third time.
The diagnosis has been devastating, but Tŷ Hafan is there for the whole family so they don’t have to face their journey alone. Mum, Nahella, said she doesn’t know what she would have done without Tŷ Hafan.
The Newport family enjoy visiting the hospice for short-breaks, allowing mum and dad to have time to rest and unwind with 11-year-old daughter Reagan. Nahella said: “They have become an extended part of the family and have completely changed our lives."
He loves the sensory area and the arts and crafts room. He can’t see very well so the sensory elements are so beneficial for him.
Casey enjoys spending time at the hospice and is always smiling when he’s there.
And the care doesn’t stop at the hospice. Shirley Valentino is Casey’s Family Support Worker and visits the family regularly at home.
Shirley said: “It’s hard to imagine what Nahella and Anthony must be going through, but I give them the chance to talk, to share their fears with each other and help them have the energy to give Casey and Reagan the care and support they need.”
Reagan has joined Tŷ Hafan’s Super Sibs group, which gives her the chance to make friends with other children who understand what having a life-limited brother or sister is like. It also means she can still have fun and enjoy her childhood, despite the amount of time that her mum and dad need to devote to looking after Casey.
“It’s a really homely environment and I know it’s where we’ll want to be for end-of-life care. Tŷ Hafan is truly amazing and I can’t thank them enough.”
The hospice has had such a positive impact on us; not only do they care for all Casey’s needs, but they also support the whole family as well
Tŷ Hafan takes its support to wherever it is needed: at home, at school or in hospital. We do this completely free of charge for families in Wales that need us. Please help us continue to be there for life-limited children and their families, so they can make the most of the precious time they have left together.