You’d never pick from looking at her that Emma has a rare and unusual condition, you see when we met 5 year old Emma, from Cranbourne, VIC, in October 2011, she hadn’t eaten any solid food for 4 years.
Having been born prematurely, weighing just 510 grams, Emma was initially tube fed at hospital and then subsequently developed further medical issues (including chronic lung disease), that required further ongoing supportive tube feeding, which set back the limited progress she had made onto solid foods and had left her with a severe aversion to food. So severe that even the smallest crumb in her mouth caused her an extreme amount of distress.
Emma had been assessed by specialists at the Royal Children’s Hospital Melbourne and Monash Medical Centre, and had participated in specialised joint feeding programs – all of which had been unsuccessful in overcoming her food aversion. So Emma had needed to obtain all her nutrition via specialised formulas. She would lick certain foods such as rice crackers, but would not actually ingest them.
Her medical team and her family had reached the end of the road and were at a loss at what to do next. Her doctors had never seen a child with such a severe food aversion.
With her weight on a continuous down-slide, keeping up an adequate calorie intake for her was not proving to be possible. Emma was tiny for her age, not registering on the standard medical charts in either growth or height. Specialists had been unable to tell Emma’s family what the full impact would be on Emma’s quality of life in years to come.
Emma’s treating team identified a specialised program for children such as Emma in Graz, Austria (www.notube.at) which has an incredible success rate. Emma’s paediatrician recommended that ideally she undergo this intense treatment prior to starting school in 2012 to avoid social stigmatization and related difficulties with feeding her formula at school.
However, the $24,000 cost of the program and $5,000 for airfares for Emma and her mum, was not something that Emma’s family could afford.
In October 2011, I Give A Buck! launched an Appeal to raise $5,000 towards the cost of Emma’s treatment and within just a few weeks $9,369 had been raised. The publicity that Emma’s Appeal received also resulted in another possible funding option coming to light for Emma’s family and we’ll keep you posted on their progress.