There was a time when Katie felt like a prisoner in her own bedroom.
Her physical condition had deteriorated due to Holt-Oram syndrome, a rare condition that affects the upper limbs and heart. Katie also experiences Agoraphobia. The combination left her feeling trapped.
“I spent five years in my bedroom. The only time I got out was to go to hospital,” says Katie.
“My partner suffered carer’s burn out. I was relying on my children to help me, which ruined any relationship I had with them. My eldest daughter – who was only a teenager at the time – took on the Mum role. I wasn’t managing my house. I felt worthless. It was a tough time.”
All that has changed now, thanks to support from UnitingSA and the National Disability Insurance Scheme (NDIS).
In mid-2022, Katie was connected with UnitingSA’s NDIS Support Coordination Services. The team helped Katie access the support she needed, including a new electric wheelchair and bed, as well as connecting her with a UnitingSA Support Coordinator and Recovery Coach.
“She really helped me. I was dying in that house. It wasn’t just my sickness; I was hoarding,” Katie says.
The crunch point came when Katie was very sick and called an ambulance.
“There was so much stuff in my house that they couldn’t get their stretcher inside.” have an amazing team around me.”
That was the trigger for change. UnitingSA helped Katie clean up and then move into a more wheelchair-friendly home.
They also helped coordinate a range of supports. Three regular carers now help Katie with her cleaning, personal care and cooking.
Katie’s new wheelchair has given her more than independence. It has given Katie her smile back.
“I love the beach. They have accessibility days where they put down matting and you can roll out onto the beach.
“I got bogged but I did get to touch the sand,” she says with a big grin.
Katie’s new set of wheels have given her a new lease on life and the freedom to move.
“I can leave,” she jokes. But her light-hearted comment has a serious edge.
“If we’re having a disagreement at home – I can get away rather than being stuck. It stops things from escalating.”
UnitingSA has helped Katie through some tough times. Her isolation effected her wellbeing.
“I just didn’t care anymore,” she says.
“I wasn’t doing my makeup and I went three months without brushing my hair.”
“Now I’ve got a carer, I get my hair straightened regularly.
“I used to feel like I was a burden. It is so good to be able to do things myself.”
The support has transformed Katie’s outlook.
“When I was struggling with those issues, I didn’t want to go out – now it’s hard to get me to go home!” she says.
“I get to out to lunch and to comedy shows. I’m seeing old friends again.
“I’ve been to festivals, like Illuminate Adelaide and the Garden of Unearthly Delights.”
Things are improving. Perhaps best of all, Katie believes the additional support coordinated by UnitingSA has helped her to rebuild relationships with her children.
“I feel like a Mum again. My daughters and I are friends again. We’ve still got some way to go but things are so much better.”
And what is Katie’s next ambition? “I’d like to swim in the ocean,” she says.
“And I’d like to work in disability. I’d like to be a mentor and share my lived experience. I think I could help inspire others in a similar situation.”