Darcy’s story

Two-year-old Darcy is a determined little boy, defying all the odds by living with an extremely rare chromosome disorder.

So rare in fact, he is believed to be the only person in the world with this condition.

Darcy was born in September 2017 and despite a normal pregnancy and tests that came back clear, he was born with severe respiratory issues.  From the start, Darcy proved to be a fighter as sadly most babies with similar conditions don’t make it past birth.

Darcy has severely complex health issues, some that present similar to cerebral palsy, which impact on his muscle tone, respiratory system, lungs, heart, hearing, eyesight, sleep and speech, which now causes him to have global developmental delay.

Darcy has had many hospital admissions, surgeries and unfortunately spent most of his first year of life in hospital. He can sit with support, loves walking in his walker and can say a few words but he needs constant assistance and supervision with all self-care including bathing, sitting, standing, feeding, playtime and sleeping.

Despite all this, he is the most loving, affectionate and happy little boy.  With a love of the outdoors, music, art, books, bubbles, and most of all playing with his big sister Indiana, little Darcy continues to reach milestones despite his tough start to life.

Darcy’s mum Jacinta said “The Children’s Hospital Foundation has helped us in so many ways over the past few years, from making our hospital stays more comfortable with the cuddle carers who will come hold Darcy whilst I have a shower, to the volunteers who come to play with both Darcy and his sister with books, bubbles, face painting and music therapy”.

Darcy’s combination of health issues is still classified as life limiting and without a proper diagnosis, his short and long-term future are all unknown.

Jacinta told us

“this unimaginable life changing situation has taught us to make the most out of every day together, and to focus on the positive. Once you choose hope, anything is possible”.

Thanks to you, we can help more families like Darcy’s and make more sick kids smile.

Story written and details correct February 2020

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