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Living life her way: Helen’s story
This World Cerebral Palsy Day, we’re celebrating Helen, a much-loved...
Henry Duca
In 2021 Henry Duca – a happy, cheeky and determined two-year-old – had already faced many challenges in his short life, reached and smashed many therapy goals within Rocky Bay’s Early Start Intervention Program (ESIP), which is funded by Telethon, and focuses on intervention for children with rare diseases.
Upon receiving multiple medical diagnoses after birth – and spending 81 days in the Neonatal Intensive Care unit – Henry endured several different surgeries in relation to his diagnoses, which include Pierre Robin Sequence (affecting his jaw and palate), Tetralogy of Fallot (a congenital heart condition), Obstructive Sleep Apnoea, and dysphagia (resulting in breathing and swallowing difficulties), and a hearing impairment.
The story continues...
Henry was referred to Rocky Bay’s ESIP that same year by his Perth Children’s Hospital based Occupational Therapist, where he received physiotherapy, occupational and speech therapy with intervention taking place in the comfort of his own home – which was a great support to his parents, Leanne and Simon Duca.
Fast forward just over four years, and Henry has blossomed into a vibrant and curious six-year-old, tackling new challenges and goals head on.
“Henry has made incredible progress since he began early intervention therapies with Rocky Bay’s ESIP”, says Leanne. “The ESIP proved valuable for Henry and our family through assessing and planning for community-based therapies, establishing early individual goals and assisted immensely when applying for access to the NDIS.
“Watching Henry become more independent and achieve goals we were told he may never be able to achieve, particularly his ability to mobilise and transfer (with appropriate supports), and communicate using his AAC devices, strength and coordination building.”
Henry transitioned to Rocky Bay community-based early intervention therapy once he gained access to the NDIS and has been able to continue to access therapy both at home and at a Rocky Bay hub. He receives physiotherapy and occupational therapy, and thanks to a renewed NDIS plan with increased capacity, he will also be able to access ongoing speech therapy.
“(Henry’s) ESIP therapists were able to complete all the required assessments and applications to ensure he received an appropriate NDIS plan, including funding for therapies and equipment,” explains Leanne.
“As we remained with Rocky Bay, the transition was seamless. We were able to retain some of the same therapists that already had wonderful established therapeutic relationships with Henry, and the continuity of care was an element we strongly appreciated.”
How we helped
Leanne says that they value the support from Rocky Bay as it is highly individualised to Henry’s specific goals and is adaptable to their availability, as well as valuing the option of accessing therapies at home or at a hub, or even in collaboration with Henry’s school.
Leanne shares that over the years, Henry has undergone other large and complex surgeries including open heart surgery (which requires ongoing monitoring), and corrective orthopedic surgery, which required extended periods of rehabilitation.
“He lives with ongoing hearing, feeding, speech and fine and gross motor challenges. Henry is only one of two children in the world (the other child being in the Netherlands) with the specific chromosome deletion that is responsible for his intellectual and physical disability.
“With such limited information or research on his specific condition, it has been incredibly difficult at times to ensure he has access to all the appropriate supports he requires.”
Outside of his therapies and interventions, Henry is now a fully-fledged primary schooler who “loves anything loud and bright!” explains Leanne.
He has a love of horses that began when he first experienced Hippotherapy and has quite the collection of toy horses, and excitingly for Henry he has adopted his Hippotherapy pony, Swindy, at RDA Brookvalley Farm.
“He loves being outside, watching the wind in the trees and exploring our new neighbourhood along the river. He loves music and dancing, swimming and water play, and rough and tumble.
“Henry is still very much a happy and chilled boy and is even cheekier! “He loves to use his AAC device, particularly at school, to offer his opinions or make jokes. He loves school and proudly served on the school council (in 2025).”
Henry has faced every challenge in his young life with so much courage, resilience, love and support from his family, with his progress a testament to the power of inclusion and how being surrounded by the right supports, community, and interventions like Rocky Bay’s ESIP can help a child discover their strengths, achieve goals and create a positive impact later in life.
A few words
“Henry is still very much a happy and chilled boy and is even cheekier! He loves to use his AAC device, particularly at school, to offer his opinions or make jokes. He loves school and proudly served on the school council (in 2025).”
- Leanne Duca
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