Lauren’s special visitor
LAUREN Mullane hasn’t known anything different, after being diagnosed with Myasthenia gravis (MG) when she was only 2½ years old.
The rare disease, which affects muscle control, slows – but certainly doesn’t stop – the bright six year old, who humbly describes her condition as “a little bit annoying”.
The realities of the neuromuscular disease are that Lauren can just run out of puff, and she’s stuck with a whole lot of medication and visits to hospitals – something that would be a lot for anyone, let alone a six year old.
Her mum, Erin Mullane of Port Douglas, said aspects of the condition frustrated her daughter such as her height, which is less than normal because of her medication, fatigue that can throw any day way off track, and that sometimes she can’t keep up with other children in the schoolyard. She’s still an energetic little girl though. “She is not defined by the chronic disease that she has. She’s learned to live with it.”
Living with MG means daily medication, monthly infusions at the Cairns Hospital and visits to Melbourne every three to six months to visit Dr Andrew Kornberg at the Royal Children’s Hospital.
Ms Mullane said when Lauren was diagnosed, where she got treatment didn’t matter, “she needed the best”.
Dr Kornberg, a paediatric neurologist, has been treating Lauren for 2½ years.
Lauren said visiting Dr Kornberg made her happy because “he gives us lots of information about how I’m going”.
This month, Dr Kornberg has been flying solo around Australia on a journey to raise money for the Royal Children’s Hospital.
He’ll spend March visiting 38 places around Australia, and nine patients.
Lauren is lucky to be one of the patients that gets a visit from him instead of the other way around – her teacher at St. Augustine’s, Gayle Duncan has been tracking his progress via the flyforthekids.org website as a class activity each morning.
Next Tuesday he’ll be stopping by St Augustine’s where he’ll speak to the entire school (and of course Lauren) and then oversee a paper plane competition by students.
The school community will be presenting Dr Kornberg a cheque to go towards the Royal Children’s Hospital Good Friday Appeal.
Lauren Mullane of Port Douglas with her teacher Gayle Duncan.