Brave Ellis, now aged seven, underwent gruelling treatment and surgery to remove the cancerous tumour from his bladder and prostate. He has been in remission for the last five years but unfortunately, NF1 causes large benign tumours to grow throughout his body, including on his arteries, spine and airway.
The condition exhausts Ellis and he is unable to walk up the stairs or play like other children his age. Sadly, doctors have told his family that they don’t think Ellis will survive into his teens, which is why they are doing everything they can to make the most of every moment.
Tŷ Hafan, the hospice for children in Wales, has been of great support to the family – providing play therapy at home, vital emotional support and day visits at the hospice.
It is such a relief to be able to speak to Tracy, our Family Support Practitioner, about our worries and it’s great to know she is always there at the other end of the phone if we need anything.
Mum, Ceri, said: “Ellis can totally relax when he’s at Tŷ Hafan. He gets really anxious about his condition and finds it hard to be around other children.
“It is such a relief to be able to speak to Tracy, our Family Support Practitioner, about our worries and it’s great to know she is always there at the other end of the phone if we need anything. We can’t thank Tŷ Hafan enough for what they do for our entire family.”
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.