Joe was one of the first children to benefit from Haven House services after he suffered catastrophic brain damage at birth.

He was not expected to be able to breathe independently when he was taken off his ventilator at five days old, but against the odds, he did and he was allowed to go home. He was diagnosed with cerebal palsy and also suffers from regular seizures and scoliosis (curvature of the spine). He is visually impaired and fed through a tube in his stomach as he is unable to swallow.

When he was a year old his parents, Anna and Andrew from Haringey, were referred to Haven House by the community nursing team. Not having needed to think about what a children’s hospice was like before they were curious to see it. They immediately realised what an incredible place it was and now, fourteen years on, view it as their ‘home away from home.’

Anna says:

Looking after Joe is a 24/7 job and it is exhausting. Haven House is part of our family and offers us a true respite when Joe stays there. We are able to be a ‘normal’ family and go walking with our two younger sons and just be spontaneous.

As well as respite care, Joe accesses the toy home loan service and also has a programme of play for the days when he is not at school. His brothers, Nate and Fran, attend some of the events Haven House organises for siblings of the children they care for. They like knowing Joe is safe at Haven House and call it 'Joe's hotel'

Anna concludes:

If and when the worst happens it is very reassuring to know that we can come to Haven House. We know Joe will be in a happy place and that the caring staff will be there for the whole family for as long as we need them.


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