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A diagnosis of Batten disease, a rare and terminal childhood condition, has a life-long impact on the family. Our Family Support Service provides holistic support to families from the point of diagnosis and we are developing the service to include a specialist support group for bereaved parents.
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Beneficiaries
Situation
Batten disease is a terminal neurodegenerative condition that affects children and young adults. Families face many challenges, particularly with a 'postcode lottery' of care and support, depending on where they live in the UK. They are effectively grieving from the day of diagnosis and many feel isolated. When patents lose their child, this isolation is magnified as services are withdrawn and the caring role ends. They need specialist support and a forum to connect with other bereaved parents.
Solution
We advocate for families across health, education and social care through our family support service. We provide emotional and practical support and facilitate a forum for families to connect to one another. Our bereaved community is sadly growing and parents have expressed a need for specialist support. We are implementing a monthly group session for bereaved parents with a trained counsellor, to reduce their isolation and enable them to build friendships with other bereaved Batten parents.
