IN HONOUR of Children's Hospice Week, Little Havens is highlighting the exceptional work being done to support children with complex or incurable conditions.
Among the many children benefiting from their care and support is 12-year-old Oscar, a remarkable young boy with quadriplegia cerebral palsy and dystonia.
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He is known for his 'cheeky personality', a huge smile and a love for everything Harry Potter.
Oscar, 12 from Braintree, was born with quadriplegia cerebral palsy, a four-limb movement disorder.
More recently, in 2021, Oscar’s gut started to fail. He also had a burnout from dystonia, another movement disorder Oscar lives with, which affected his brainstem and cannot recover from this.
His mum, Adelaide, said: "When we were first referred, I was horrified. I had this image of a hospice being very sad and full of dread.
"I had Oscar and his little brother Jack with me, and within minutes, we soon realised it's a really happy place and not sad at all.
"Little Havens have taken the time to get to know Oscar, he’s not just someone who can’t talk.
"They care for him how I would as his mum. The amount of love and support that’s shown to him can’t be taught, it’s really special and comes naturally to anyone who works at Little Havens."
After being referred to the hospice, the family began receiving care in their home from the Little Havens Community Team.
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This regular respite allows Adelaide and husband Rob to be parents, not carers and gives them time to rest.
It costs more than £83,000 every week for the charity to be there for nearly 300 families in Essex who need this type of specialist care.
This can only happen because of the generosity of people across the county making kind donations, organising fundraising events, visiting the charity’s shops or leaving gifts in their wills.
To make a donation and support the life-saving charity, visit havenshospices.org.uk/oscar.
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