Cyanne is nothing short of busy. From being on the Whyalla Youth Advisory Committee, to working with the Whyalla Access Group and being a Channel 7 Young Achiever Award winner, she is showing no signs of slowing down.
Cyanne and her twin sister Zia both have Limb-Girdle Muscular Dystrophy. The twins were first diagnosed with Muscular Dystrophy at 2 years old, and their diagnoses was refined to Limb-Girdle Muscular Dystrophy when they were 21.
Cyanne describes the disability as a kind of degenerative muscle weakness, which will continue to progress over time.
“Basically, I need help with every day things 24×7. I can’t do anything without help.” – Cyanne
As with most young people, living at home with your twin sister and family at 27 years old means that she is not living the independent young life that she craves. Cyanne is currently looking to move out of home and into her own place.
“I think Zia is quite happy about me moving out. We drive each other crazy.” – Cyanne
Cyanne applied to the Youngcare At Home Care Grants for a cough assist machine. The addition of this machine will enable both sisters to live with independence.
“About 10 years ago now, my sister got really sick and she was flown up to Adelaide and stayed in the ICU for nearly two weeks. That was all because she had a common cold and could not cough properly to bring the phlegm up. When she was in Adelaide, the doctors got her to try the cough assist machine, which we had never even heard of before. It saved her life.”
“Over the years I have had to rely on it as well. We only have one, which makes it difficult, if I go out of town and my sister stays home. Because we both need it we have to share which doesn’t work.” – Cyanne
This machine would mean that Cyanne and her sister could go their separate ways and not need to be living in each other’s pockets all of the time. It also means that when the girls get sick, they will be able to recover in their own homes, rather than needing to go into hospital.
“We’ve had a lot of issues with not being able to have support workers come and toilet me or shower me while I’m at the hospital so basically I have to check out every day just to be able to use the bathroom facilities. Whereas at home it would be so much easier, and I would be able to recover faster. I’d also not be at risk of catching any other germs from other patients.” – Cyanne
Without the machine, neither of the girls would have the chance to choose how they want to live their lives, where they want to travel or what they want to do day to day, without the consideration of the other person.
“I’d have to stay home, and I wouldn’t be able to travel anywhere without my sister. I would lose all of my independence and be stuck with my sister all the time, afraid of getting a cold without the cough assist machine.” – Cyanne
These young women, who are so full of ambition and committed to working with City Council and other advocacy groups, are an example of how one simple piece of equipment can mean the ability to live a life full of independence and choice. To the supporters of Youngcare who have helped make this possible, Cyanne says:
“Thank you. We would not be able to live a normal life without your help. It really means a lot to us.”
To learn more about Youngcare’s Grants programs click here