You may associate feeding tubes with the hospitalised and elderly; but stop right there! Feeding Tube Awareness Week was inspired by a 7 year old.
© Danielle Robertson Consulting Pty Ltd t/as DR Care Solutions
Feeding Tube Awareness Week will be held 5 - 11 February 2023, and I'd like you to meet Sarah Gray OAM, the Founder and CEO of ausEE[1], the support and advocacy organisation for Australians living with an eosinophilic disease.
Awarded in the recent 2023 Australia Day Honours, the Medal of the Order of Australia (OAM) recognises Sarah’s 12 years of voluntary service in community health.
More specifically, her work in setting up ausEE, running annual tube feeding awareness campaigns (since 2015), and providing valuable support to the more than 2,000 Australians who live with eosinophilic disorders[2].
Eosinophilic gastrointestinal diseases (EGIDs) occur when a type of white blood cell, called an eosinophil, is found in increased numbers in the gastrointestinal tract. Eosinophils can accumulate in the gut in response to food and/or airborne allergens and can cause inflammation and tissue damage.
The most common type of EGID is eosinophilic oesophagitis (EoE) where the accumulation of eosinophils can lead to scarring and narrowing of the oesophagus. Early recognition of the EoE in babies is when a baby fails to thrive.
This was the experience of Sarah’s four-month old daughter, Bella, in 2003. An endoscopy at 18 months diagnosed Bella with EoE. To thrive, there was the treatment option of elemental formula, a special medical food taken orally or digested through a feeding tube.
From the young age of 18 months, the family decided to feed Bella elemental formula orally through a bottle and later a cup. During those her early childhood, Bella remained weak and was not participating in the everyday activities of her peers.
She simply didn’t have the energy.
This all changed when Bella, at the age of seven, made the very difficult decision to take elemental formula through a feeding tube inserted in her stomach.
After the decision, she didn’t look back! Feeding through the tube allowed her body to absorb vital nutrients and this saw her thrive and experience energy levels previously only dreamt of.
For four years, from seven to 11 years of age, she had a routine of 10-hour tube feeding overnight, supplemented with some feeding during the day. At 11 years of age, the feeding tube was removed and she continued to drink elemental formula to supplement her diet until the age of 14.
Now at 18 years of age, while careful about what she eats, Bella no longer drinks elemental formula and use of the feeding tube is a distant memory. She now volunteers her time to ausEE and its annual feeding tube campaign to encourage kids and adults to use feeding tubes and benefit from the positive life-changes they bring.
To access information and support for eosinophilic disorders, I encourage you to use the resources provided by Feeding Tube Awareness Week[3] and ausEE[1], and meet Sarah and Bella through their virtual education program[5].
Needing care assistance for your loved one? Please feel free to call me, Danielle Robertson, at any time for an initial discussion on how to set up the right care, support and assistance at the right time and in the right place.
[1] ausEE Inc
[2] For a list of conditions, refer to the comprehensive list provided by the US Feeding Tube Awareness Foundation
[3] ausEE: Feeding Tube Awareness Week
[4] ausEE - Feeding Tube Awareness: Free Virtual Education Program