A Place to Belong

When Amber was born, her mum, Pav, never imagined the journey that lay ahead. It took ten years of appointments and surgeries before she received a diagnosis of the rare neurological condition, Prune 1 Syndrome, which means on a daily basis, Amber is PEG tube fed, requires overnight ventilation, is registered blind, non-verbal and developmentally delayed.

Everything changed in 2021 when Amber became critically ill with COVID-19. As a newly single mum, Pav was faced with heartbreaking decisions and was referred to Alexander Devine Children’s Hospice Service for end-of-life care and support.

“I thought a hospice meant I was going to lose my little girl. Instead, I found a place where we could truly live.”

Against all odds Amber recovered from COVID-19, and while her needs continue to grow, so does the joy she finds at the hospice. The moment she hears she’s coming, she smiles. In the hydrotherapy pool she experiences something few places can offer – true freedom. When she’s in the water, she’s free to move, to float and simply be herself.

“Alexander Devine didn’t ask Amber to fit into their world – they created a world that fits her.”

For Pav, the hospice became more than expert care. It became a community that wrapped itself around the whole family, offering respite care, counselling, friendship and the reassurance that they had an extended support system they can rely on.

“Every donation gives families like mine permission to breathe. It gives children comfort, dignity and happiness, and reminds us that we never have to walk this journey alone.” 

– Pav, Amber’s Mum

Our hospice service is a lifeline for families like Amber’s, but we are reliant on support from people like you to fund our vital services. Please support our Christmas appeal by donating today.

How else can you get involved this Christmas?

If you live in SL4, SL6, SL7, SL8 or RG10 postcodes, then we can recycle your tree!

Bookings open soon.