Saved by belly 'button'
SARAH Gray is helping to organise a trivia night next Saturday but the reason for the event is anything but trivial.
The Christmas in July trivia night at the Pacific Paradise State School aims to raise funds for research into a rare, incurable disease afflicting Sarah’s young daughter, Bella.
Eosinophilic eosophagitis is one of a group of conditions known as eosinophilic gastrointestinal disorders, which occur when eosinophils, a type of white blood cell, are found in above-normal amounts within the gastrointestinal tract.
When eosinophils accumulate in the gut in response to food and/or airborne allergens they can cause inflammation and tissue damage.
Bella’s condition was not diagnosed correctly until she was 18 months old.
For the next six years her primary source of nutrition was drinking an elemental formula, Neocate.
Bella has an anaphylactic reaction to egg, fish and dairy, and suffers from asthma and eczema.
She has several other food allergies including wheat, corn and soy.
As she became older it proved difficult for her to ingest the required amount of formula to grow.
Earlier this year the decision was made to have a gastrostomy feeding device, which Bella calls her tummy tube.
She now receives her nutrition overnight via a pump in two continuous five-hour feeds of 450ml each.
Sarah said that despite some anxiety about her “button”, Bella, who turns eight on July 31, had thrived since the operation
“We have had some small weight gain already,” she said.
“The other thing we’ve noticed is the increase in her energy levels.
“It has been astronomical the difference in her.
“Even though she is still eating only small amounts of food, the 900ml at night just gives her the energy to last the whole day and she wakes up practically jumping out of bed when she used to wake up still tired.”
Frustrated with the lack of research and information about the condition, the Mt Coolum mum launched her own website www.ausee.org and a registered Australia-wide charity, ausEE Inc, offering a support network for anyone diagnosed with, or caring for someone with, an eosinophilic gastrointestinal disorder.
The Pacific Paradise State School P&C, where Bella is a student, and ausEE Inc are jointly hosting next Saturday’s trivia night to raise much-needed money for medical research as well as valuable funds for the school.
It will be held in the school’s brand new, state-of-the-art, multipurpose centre.
Trivia enthusiasts who can not gather a table of six to eight people are also welcome to book.
WHAT: Christmas in July trivia night
WHERE: New Pacific Paradise State School hall
WHEN: Saturday, July 30, 6.30pm for 7pm start
COST: $10 each in teams of 6-8
BOOK: Phone Sarah on 0411 539 369. This is an adults only event, with BYO alcohol permitted.