A Melton family is calling on the community for support to purchase life changing equipment for their 14-month-old son who was born with a genetic condition so rare it is still unnamed.
Kristen Katalano’s son, Noah, was born at Joan Kirner Women’s and Children’s Hospital at just 2345 grams. He was not breathing initially, and spent the first 18 days of his life in the special care nursery.
In the nursery Noah was diagnosed with a range of abnormalities including a slightly underdeveloped cerebellum which caused Noah to have hypotonia (low muscle tone).
Ms Katalono said that despite all the challenges he is a “healthy, happy little boy and that’s all we could have asked for”.
Noah’s low muscle tone has impacted his development from being unable to sit unsupported to requiring a nasogastric tube for feeding.
Ms Katalano said Noah’s size at 14 months makes it hard to get any disability specific items for him as he is still only the size of a 5-month-old baby.
“Noah wants to be doing age-appropriate things like sitting up right in the bath, standing up to play, eating a variety of foods amongst everything else a 14-month-old should be doing,” she said.
The Katalanos have set up a GoFundMe to ask for support in purchasing equipment NDIS can’t cover to assist Noah’s movement as he develops, including a blender that will blitz food to a safe consistency, a pram that has postural and trunk support, a postural seat and bath seat, and a standing frame.
“We’ll be forever grateful for any small donation to help Noah grow. It will just mean that he can explore his world and develop much faster,” Ms Katalano said.
Details: tinyurl.com/ta4tp82r
