How gorgeous does she look in this photograph? You’d never pick from looking at her that Emma has a rare and unusual condition, you see five year old Emma, from Cranbourne, VIC, hasn’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 has left her with a severe aversion to food. So severe that even the smallest crumb in her mouth causes her an extreme amount of distress.
Emma has been assessed by specialists at the Royal Children’s Hospital Melbourne and Monash Medical Centre, and has participated in specialised joint feeding programs – all of which have been unsuccessful in overcoming her food aversion. So Emma has needed to obtain all her nutrition via specialised formulas. She will lick certain foods such as rice crackers, but will not actually ingest them.
Her medical team and her family have reached the end of the road and are at a loss at what to do next. Her doctors have never seen a child with such a severe food aversion as Emma suffers. There are no programs or organisations in Australia that can offer further help to her Emma’s family has exhausted all possibly avenues.
With her weight on a continuous down-slide, keeping up an adequate calorie intake for her is not proving to be possible. Emma is tiny for her age, not registering on the standard medical charts in either growth or height. Specialists have been unable to tell Emma’s family what the full impact will be on Emma’s quality of life in years to come.
As a parent, you’ll travel to the ends of the earth for your children – and this is close to what Emma’s family are going to need to do to give her a shot at a ‘normal’ life.
Emma’s treating team have now identified a specialised program for children such as Emma in Graz, Austria www.notube.at which has an incredible success rate. Emma’s paediatrician has recommended that ideally she undergo this intense treatment prior to starting school next year to avoid social stigmatization and related difficulties with feeding her formula at school.
However, with the cost of the program is approximately $24,000 and airfares for Emma and her mum will be approx $5,000 – and $29,000 is not something that Emma’s family can afford.
We think that Emma should have this once in a life-time opportunity to get her condition treated in time for school next year and we’re going to do everything possible to allow that to happen.
If you‘d like to help Emma, simply hop over to her Appeal pageand scroll down to the bottom of the page to make your donation.
Australian children’s charity I Give A Buck Foundation of Australia Ltd assists children from disadvantaged families who also suffer from a life-threatening or life-altering illness or condition – with particular focus on terminally ill children.