They have exhausted their paid leave caring for the youngster, who frequently becomes unwell.
The couple are hoping to raise money to fund Emily's vital treatment. Do you want to automatically post your Mail Online comments to your Facebook Timeline?
The condition affects around 8,400 people in the UK and one in 100,000 in Australia.
Early symptoms include fatigue, muscle weakness, low mood, loss of appetite and increased thirst.
Emily's parents react calmly to the youngster's symptoms in an attempt to encourage her to do the same.This dating and romance website is used by beautiful Russian women seeking foreign men for marriage and dating, love and romance.Meet Russian ladies, Russian girls, or even find a Russian Wife.Yet at just one week old she started crying out in pain and struggling to sleep.By the time she reached four weeks old, she grew 4cm in just seven days.