Cheyenne is two years old. She has Trisomy 21 (Down Syndrome), a heart condition and cystic lung disease and other complex medical conditions. Her care needs are constant including being connected to oxygen 24/7 and PEG fed five times a day.
We met Cheyenne when she was eight months old. The social work team at PCH recognised that mum Irene needed support at home upon Cheyenne’s discharge from hospital. With family living far away in the country, Mum Irene was isolated while trying to get used to caring for Cheyenne’s complex daily needs.
“Life with Cheyenne is not what we expected. She has spent over 100 days in hospital and experienced many complications,” says Irene. “Everyday normal activities like going to the shops, a café or dropping my son at school are hard with the extra work of preparing her meds, feeds and carrying her oxygen tanks.”
“Without Hannah’s House I could not have cared for my daughter on my own. I have medical issues that have impeded caring for her. My partner works away a lot. My son is only 14 years old and we don’t have family support here in the city. I am doing most of bub’s care on my own.”
Irene makes the most of the time when her support workers are on hand to care for Cheyenne. “I use the time when Hannah’s House are in to do things I find hard to do while caring for Cheyenne. I can catch up on sleep, washing, house cleaning, shopping, repairs, things with my son or go to playgroup and hospital appointments.”
During the last 12 months Irene had surgery following which she couldn’t carry Cheyenne for eight weeks. She then sustained a leg injury which restricted her walking and meant many weeks of recovery. While Cheyenne has NDIS funding, it is not enough to provide Irene with the extra support she sometimes needs. Through Telethon and other funders, we can provide additional hours and much needed respite for parents free of charge.
“That extra daily support was just not affordable through the NDIS. With my medical issues and another impending surgery, the help I get from Hannah’s House has been invaluable”, Irene said.
“I have two fantastic regular carers that I can entrust with my daughter on their own or when I’m at home. They are amazing with my daughter – caring, lovely, respectful and go that extra mile without asking.”
Our respite program is focused on providing meaningful and practical support to families. Giving primary caregivers like Irene an opportunity to have a break is vital to ensuring they can maintain their own physical and emotional wellbeing.
Watch Cheyenne and Irene’s story below:
Video created by Crimson Sky Productions.