ONE Loxton youngster and his family have shared his heart-warming story with the rest of Australia in hopes of raising awareness for a common genetic disorder.
Owen McCullough, aged two, was diagnosed with Trisomy 21, more widely known as Down syndrome, after birth – a diagnosis that in today’s society is uncommon due to prenatal testing.
Earlier this year, Owen was selected to feature in not-for-profit Celebrate T21’s photo book project, which showcases children and families impacted by Down syndrome across Australia in an aim to educate, advocate and empower other families going through the same experience.
Owen’s mother Jennifer McCullough said to have Owen, who is an ambassador for the organisation, be selected for the new project was an “amazing honour”.
“(Celebrate T21’s) current project is to update (their last) book and produce a new one, so as an ambassador, Owen has been selected to have a page in the book, which is very exciting,” she said.
“Just to think there’s such a small number Australian-wide that get the opportunity to participate in something like that.
“Being able to share his story and if it helps another family in any small way, it’s exciting and wonderful.”
Mrs McCullough said the majority of families who are given a Down syndrome diagnosis reported that they were given minimal to no support, and repeatedly pressured to terminate the pregnancy.
She said that is why projects, such as this one, which aim to raise awareness and educate people about Down syndrome are important.
“Due to the afterbirth diagnosis, our experience was different to most, but it is very common that the information that parents are given when they receive the diagnosis prior to birth is outdated and incorrect in this day and age,” Mrs McCullough said.
“It’s very negative, very stereotypical and doesn’t paint a good picture of what life is actually like.
“(So for) families and the general community (to) receive information that’s current, correct and shows ability rather than the disability, (and) getting rid of those horrid stereotypes and things that aren’t true is important.”
Owen and his family are currently fundraising to help support the production and distribution costs involved with the book, which will be released next year on World Down syndrome Day.
To make a donation visit https://celebratet21.com/collections/sa/products/sa-owen-mccullough.
“The main aim of the book is to support new families and new diagnoses, but through the campaign, it is (also) raising awareness of what T21 is, and what (Celebrate T21) do and how they help,” Mrs McCullough said.
“While we understand the current situation has impacted many families and finances, we feel that our fundraising contribution will assist many, many families going through a similar experience as we did upon Owen’s diagnosis.”