Alba is two years old and lives in Almondsbury, South Gloucestershire, with her parents. Alba’s Aunt Laura and four cousins live in Loch Leven in Scotland and it is here that Alba’s Scottish-based family have undertaken a 13-mile walk to raise funds for the hospice that supports her, Children’s Hospice South West (CHSW).
CHSW has three hospices across the South West that provide the very best care for children with life limiting conditions and their families. Alba and her family - Mum Roz and Dad Adam - are allocated 12 nights a year at CHSW’s Charlton Farm, just outside of Bristol.
CHSW is dedicated to making the most of short and precious lives through the provision of the best possible hospice care for children and young people with life-limiting conditions. The care offered at each of its hospices is not just about medical and nursing support for sick children, but enriching lives of the children and their whole family.
Roz said, “Alba has been diagnosed with Congenital Disorder of Glycosylation Type 1D. She is one of only 12 people in the world to have been identified as having this extremely rare metabolic disorder. Alba needs to be watched 24 hours a day, but when we stay at Charlton Farm it allows us to have a complete break and get the rest that we so desperately need. It’s lovely because we can be around Alba or we can go and do our own thing, all the while knowing Alba is getting the care she needs. People think we’re silly talking about how amazing it is here, but unless you see it for yourself, you don’t realise how nice it really is.”
Alba’s Scottish cousins were inspired to fundraise having heard wonderful stories from the family about the care they receive at Charlton Farm and so far they’ve raised almost £1,200!