Since 2009, Telethon has funded the Hospital Support Program delivered by Kalparrin to provide practical guidance and support to Western Australian children with disability and their families at Perth Children’s Hospital.
The program helps families, often at the point of diagnosis or during the many outpatient appointments that follow, to understand the implications of the diagnosis and to get necessary supports in place quickly.
Two-year-old Emris was born at 24-weeks and later diagnosed with bronchopulmonary dysplasia, a chronic lung condition. He spent the first six months of his life at King Edward Memorial Hospital and Perth Children’s Hospital (PCH). To help him breathe, Emris was ventilated for the first five-weeks and then put on a CPAP machine, before being transitioned to oxygen.
Emris was born at 24-weeks with bronchopulmonary dysplasia, a chronic lung condition. He spent the first six months of his life at hospital. Credit: Supplied by family
It was overwhelming for new mum Tayla to receive the news of Emris’ diagnosis and how to navigate the health system. She was feeling helpless and said: “It was very hard to see other children go home while watching Emris have to fight for his life.”
While he was admitted at Perth Children’s Hospital, Tayla was with Emris every day and night, only leaving to go home and shower every couple of days.
She couldn’t work and due to COVID-19 restrictions at the hospital, it was difficult for her to find support and connect with other parents who would understand what it’s like to have a child with a disability.
Tayla was told by doctors that it was unlikely Emris would ever return home, but he defied the odds and was later discharged. One of Tayla’s favourite things about Emris is how strong he is and how he never gave up.
Emris’ mum, Tayla, discovered the Hospital Support program delivered by Kalparrin to help navigate the health system and connect with other families. Credit: Supplied by family
During a hospital admission, Tayla visited Telethon beneficiary Kalparrin at the Family Resource Centre at PCH. Their Family Support team were able to provide Tayla with practical information and supports that empowered her to advocate for Emris and ensure the most positive outcomes in his care.
Kalparrin was also there to offer a listening ear and connect her to other parents. Tayla regularly visits the Kalparrin team when Emris is admitted as an in-patient or attending an appointment at the hospital.
Tayla says: “I am very lucky to have accessed the In-Hospital Support Program with Kalparrin. They made me feel like someone was always on my side. I want other parents to know that there is someone there for them as well.”
The Kalparrin Hospital Support Program gives parents, caregivers, and children the support and knowledge they need to feel empowered throughout their journey and ultimately, to reach their full potential.