Born in April 2017, in Buckinghamshire in the UK, Alice and Verity Castles are helping to raise awareness of genetic disorders…
The adorable pair have a tight bond – and are helping each other reach developmental milestones, one step at a time. Little Alice was diagnosed with a rare genetic disorder called Prader-Willi syndrome just a month after she was born.
When mum, Charlotte Castles, delivered the twins by C-section, Verity was full of life, and showed all the usual signs of a healthy baby. However, Alice was limp and unresponsive. She had to be fed through a feeding tube as she was too weak to swallow. After weeks of tests, doctors diagnosed her with Prader-Willi syndrome which causes developmental and behavioural delays.
“The hardest part for me was learning that I would have to inject Alice with growth hormones every day – potentially for the rest of her life,” says Charlotte.
Alice also attends weekly physio appointments to help her live as normal a life as possible. But according to mum, Alice’s sister Verity is the biggest inspiration.
“Verity pushes Alice to strive and is a constant reminder of where she can get to if she keeps pushing herself.”
Charlotte now works for Jeans for Genes to help raise awareness about genetic disorders.
Clarens, Free State Province