Two-year-old Matthew was diagnosed with a type of eosinophilic gastrointestinal disease (EGID) called eosinophilic oesophagitis when he just over 12 months of age, after his family pushed to find answers to his ill health.

Jenny Lee, Matthew's mother, is hoping to raise awareness about EGID conditions this week for National EOS Week, marked this week by the Bendigo Conservatory which has been lit up with pink and purple lights this week.

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"It's quite complex and basically we came across it, or what first raised alarm bells for us, was that he wasn't putting on weight as a new baby," she said.

"And then when we tried to introduce foods to him he just basically vomited every time he ate.

"It's certainly a condition that just has so many implications, even just the simple things of being able to go out for a meal particularly currently because he is so restricted with his diet.

"It's that challenge of trying to give give him as normal life experience as possible."

While Matthew's condition will not affect his life expectancy, the quality of his life has already been impacted in many ways.

Matthew is on a high-dose anti-reflux medication and has also had to eliminate milk, egg, wheat and soy from his diet. Mrs Lee said the pain of eating and resulting vomiting results in low weight.

When undiagnosed the condition can lead to eosophagus damage as well as potentially contributing to disordered eating in the long term where sufferers try to avoid the pain of eating.

Like many others with the condition, Matthew also has allergies that contribute to the condition and a larynx deformity - although this helped him get a proper diagnoses.

Brave Matthew will need gastroscopies every three to four months to monitor his condition going forward. Mrs Lee explained a common outcome can be that patients require a feeding tube because the esophagus gets so damaged that they can't swallow or swallowing becomes too painful.

Prior to Matthew's diagnosis, the condition was impacting not just his weight but also his milestones.

"He was just not thriving in his milestones in terms of crawling, and some thing he went backwards," Mrs Lee said.

"It just became that medical process of having appointments, doing tests and things like that.

"So that was an interesting experience in itself because we did cop a fair bit of, 'some babies just vomit' and people wanting to be helpful and reassure you.

"But you're sort of going, it's not helpful because there is actually something quite wrong here."

Mrs Lee said being an "older mum" helped her hold her ground and fight for her son, something that might have been more difficult if she was younger.

While eosinophilic oesophagitis is a rare disorder and even doctors have admitted to the family they were unaware of the condition, young Matthew now has a team at the Royal Children's Hospital with a gastroenterologist, immunologist, an allergist, an allergy dietitian, and a local friend Dash (three years old) who has the same condition.

Mrs Lee also said the ausEE Inc. charity, who have been hosting the National EOS Awareness Week since 2011 to raise awareness of painful eosinophilic gastrointestinal diseases (EGIDs), had been hugely supportive.

"They've got a Facebook group for carers and their support has been absolutely amazing in terms of the Facebook group," Mrs Lee said.

"I was a bit reluctant to join it and then jumped on and people were helping out with ideas for food substitutions or just supporting people that are struggling or newly diagnosed and things like that."

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This year the awareness week has been held August 7 to 13, including a 24 hour challenge for people to follow the restrictive diet to which EGID sufferers must often adhere.

The top eight challenge means not eating any of the top eight common allergenic foods; milk, egg, soy, wheat, peanut, tree nut, shellfish and fish.

An ausEE spokesperson said there is no cure for EGIDs and one of the common treatment options is an elimination diet which is tailored to the individual.

"Some people with an EGID may be able to identify specific food(s) that trigger symptoms, but most cannot," they said.

"Some doctors may suggest removing up to eight common foods allergens which is the idea behind our Top 8 Challenge."

The week is as much about raising awareness of life with the condition as it is about raising funds for medical research, and Mrs Lee is keen to raise awareness locally.

"For us to have such an early diagnosis has been fantastic," she said.

"People who are diagnosed later have sustained damage to the esophagus, and they often end up needing really painful dilation procedures to help fix the esophagus so that food can pass down.

"One of the common issues is that because the esophagus narrows food gets trapped in the esophagus and then you need surgery to remove it."

While the Lee family still face difficulties managing their son's condition, they hope to prevent as much future discomfort as possible, and they hope by raising awareness they can prevent others from suffering.

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