Lilly’s story

Lilly has spent much of her five years at the Children’s Hospital. She has a rare auto-immune disease, epilepsy, severe anxiety, bronchiectasis and parechovirus and has already had more medical procedures than most adults ever have.

Lilly suffers from terrible seizures at night, which may have also contributed to her severe anxiety says her mum, Kimberley – “Her eyes shoot left and right, and you can’t reach her – she’s unresponsive. Her lips might pucker. Her breathing can be affected. She can be like that for five minutes or longer.

Despite five years of lumbar punctures, blood tests, anaesthetic and transfusions, sweet Lilly still smiles when she swings through the familiar doors of the Queensland Children’s Hospital. Her mum Kimberley says:

“When we have to come back into Hospital, Lilly doesn’t seem to remember the bad stuff. Amazingly she hasn’t been traumatized by what she’s been through there.”

Kimberley is so grateful for the cheerful volunteers –  part of Patient and Family Support Services – who bring reassurance and break up dull days. She’s grateful for Lilly’s medical team who always make time to explain things. She’s grateful for music therapists who sing to Lilly while they’re taking blood, and for Nanook, Lilly’s favourite pet therapy dog, who comes by to wag a friendly hello when Lilly’s in an isolation room and can’t play with other kids.