'Scary' time for mum as daughter starts school

By Angela Thompson
Updated November 5 2012 - 7:39pm, first published February 4 2009 - 10:41am
Sarah Davies helps daughter Madison, 5, get ready for her first day at Dapto Public School. Madison suffers from a rare protein deficiency. Picture: ROBERT PEET
Sarah Davies helps daughter Madison, 5, get ready for her first day at Dapto Public School. Madison suffers from a rare protein deficiency. Picture: ROBERT PEET

As the region's smallest students take their seats for the first time, one Illawarra mum is fretting more than the others at the prospect of saying goodbye.Madison Davies starts kindergarten at Dapto Public School today with a bright pink backpack, a restrained whip of long blonde hair ... and an unenviable medical condition. In 2007 Madison became only the fourth person in the world diagnosed with mitochondrial trifunctional protein deficiency.The condition, so rare that diagnostic testing had to be sent overseas, means Madison's body can't produce energy from food.As a result she has a cataract in her left eye and a heart murmur that requires regular check-ups. She mustn't consume more than 11g of fat each day and her muscles are weak, causing her to retreat to her wheelchair when her stamina wanes.She is smaller than other children her age, and last August she fell into a diabetic coma. It's little wonder that mum Sarah Davies finds leaving her - albeit with a carer for three hours of the day - "pretty scary". "It's a big school," Mrs Davies said."I'm worried about her in the playground."Problems first showed up in genetic tests soon after Madison's birth and doctors didn't expect her to live long.Because her condition is so rare, there is little precedent to show how her health problems will progress later in life."Most children (with the condition) don't live past the newborn period. When Madison was born they gave her six months," Mrs Davies said. "They can't tell me anything else because they have no-one really to go off." For Madison, today is the one she's been waiting for. She's thrilled to be starting school."She's very excited," Mrs Davies said. "She loves doing craft and meeting new people and she says to her little brother that she's a big girl now."The Mercury met Madison in June 2007 when a benefit night was held to raise money to have her tests done in Germany - one of only two countries with the technology to help her.Mrs Davies and husband Mark were inundated with donations then and remain grateful for the support.

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