Marching to Her Own Beat

Nine-year-old Ellie is marching to her own drum beat. Born with Down syndrome, Ellie faces a number of physical and intellectual challenges that impact her ability to communicate – but she hasn’t let that stop her from becoming the first girl with Down syndrome in New Zealand history to compete in the national marching competition.

Down syndrome is the most common chromosomal variation in newborn babies; approximately one in 1000 children is born with Down syndrome in Aotearoa. The condition results in an intellectual disability and physiological abnormalities, such as a larger-than-average tongue, a smaller-than-average mouth, and lower muscle tone. All of these factors combine to significantly impact the ability of kids like Ellie to speak, read, and write.

In 2021, Ellie and her family in Nelson joined our partner charity, UpsideDowns. They're a national charity dedicated to helping give a voice to Kiwi kids with Down syndrome by providing speech and language therapy. With regular visits to her therapist, Emma Joy, Ellie has embarked on an individualised path to support and develop her speech, language, and communication skills. Without regular speech and language therapy, which is unfortunately not publically funded in Aotearoa, many children with Down syndrome will remain non-verbal through their lives. Ellie’s mum, Sarah, says working with Emma Joy through UpsideDowns has been the “saving grace” for her daughter’s developing communication.

“Since starting with UpsideDowns speech language therapy, Ellie has been able to string more words together, along with tackling way more two and three-syllable words than ever!”

Speech and language therapy has really helped Ellie express her natural sass and enthusiasm, and she has found the perfect outlet for it in the sport of marching. It puts the young girl’s growing communication skills to the test, requiring step counting, arm movements, coordination, and timing, and it’s helping to grow Ellie’s vocabulary with new words like “halt" and "quick march”.

Of course being able to participate in a sporting team isn’t just fantastic for Ellie’s personal development, it also allows her to socialise as part of a team. And the Ashton Kilties, Marlborough's under 13 marching team, is an amazing squad.  

“We really think our coaches, Ms Jodie and Ms Skye, are exceptional souls who show what inclusivity really looks like in today’s world,” says Sarah. “We are so blessed that Ellie's teammates don't see her disability, they only see Ellie, and the love they show her is truly inspiring to watch!”

Research shows speech and language is the single most important intervention to improve mental and physical health outcomes for people living with Down syndrome. Because this essential service is not publicly funded, families must turn to private therapy – the cost of which is too great for many to afford.

UpsideDowns enables families to access this life-changing therapy to help kids like Ellie develop the crucial communication abilities they need to support themselves through their education journey, promote mental and physical health, and pursue their passions. For Ellie, that passion has most recently led her to Invercargill for the South Island Marching Championships, and her mum could not be prouder.  

“Ellie loves the spotlight and when it's time to take the field, the pressure comes on, and Ellie shines like the star she was born to be!”

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Words and images supplied by UpsideDowns