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Addy, aged 6, has Batten Disease, a brain disorder known as ‘childhood dementia’. Addy can no longer walk and eat; she will eventually go blind and lose all her cognitive and motor skills. Help Julia’s House care for Addy and her family at the hospice and at home, so they can embrace every moment.
Categories
Beneficiaries
Situation
Nothing can prepare a family for hearing the devastating news their child has a life-shortening condition, with complex needs requiring 24 hour care. It’s a life changing moment. Homes may need adapting; parents may need to give up work. Such enormous strains can leave families exhausted, isolated and struggling to cope. Without dedicated expert care, many will reach breaking point, consumed by the stresses of trying to keep their child safe and alive.
Solution
Julia's House offers a lifeline of bespoke care to seriously ill children and their families. Our dedicated team of nurses and carers, provide clinical, emotional and practical support, whenever and wherever families need us. These essential respite breaks at home or in our hospices offer care, fun and friendship for children, and vital breathing space for exhausted parents. The whole family – parents, siblings and grandparents – are regularly supported with events, therapies and counselling.
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