Geelong toddler Alfie lives with a genetic disorder resulting in him needing a feeding tube, with Feeding Tube Awareness Week occurring this week.
The two-and-a-half-year-old was born premature and developed an undiagnosed disorder that mimics cerebral palsy.
Mum Jessica Willder said Alfie has had a feeding tube for about 12 months as he had trouble eating and drinking.
“What he doesn’t drink orally goes down his tube, which some days could be all of it and other days could be half or a quarter of it,” she said.
“His feeding tube goes down the nose and the back of his throat into his stomach, which has to be replaced every two to three months.
“Then with all the tape on his face, we have to change it whenever it starts to come off, which could be every couple of days or once a week if we’re lucky.
“It’s rather traumatic as we have to wrap him up so that he can’t get his hands on the feeding tubes and pull them out while we’re changing all his tape.
“It takes me, my husband, and then my two daughters to help hold him still and get all the tape off and put more tape back on to keep the tube in place.”
Geelong’s Catenary Lighting will continue to light up purple until Saturday 7 February to raise awareness of tube feeding for the annual Feeding Tube Awareness Week.
Many location across Australia and New Zealand light up blue and purple for the week, which is held by charity ausEE.
“Purple is a common colour of feeding tube supplies, while blue represents what flows through the tube; whether that’s formula, blended foods, breastmilk, or water,” chief executive Sarah Gray said.
Ms Willder said it was important for people to know that they were not alone and encouraged people to reach out to others.
“It shouldn’t be a taboo subject…and it shouldn’t be something that people stare at or make assumptions about,” she said.
“You take each day as it comes, and each day will be slightly different, but it can help to link in with other parents who have that experience.
“The number of times that I have been asked what sort of cancer my child has has been a lot, but he doesn’t have cancer.
“Most people think feeding tubes are for people that have cancer…and there are so many other reasons why people need feeding tubes.”
Visit feedingtubeaware.com.au for more information and support networks.
