Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’
Leanne Clark is a lifelong carer to her husband Ross and daughter, Ashleigh, both living with the rare disease, Fabry.
“Sometimes you just want to feel life is normal and you can go and do everyday things.”
It’s been hard, I won’t say it hasn’t been. You can’t help but ask at times, “Why us?”
But I know there’s a lot of people caring for others who are much sicker than us.
I could only work part time to care for Ross when he went on dialysis. I was always there in case something went wrong and he needed me.
Financially it’s been difficult as well. We didn’t expect Ross to be health-retired and have to give up work so early. Ross had a kidney transplant in 2015 and has needed a lot of drugs, some are free, but many aren’t. The health system can be expensive as a lifelong patient and, while we are grateful for treatment funded by the Government, there are a lot of expenses you have to pay for yourself.
It means we haven’t been able to do things like other families, like going on overseas holidays. Sometimes you just want to feel life is normal and you can go and do everyday things.
Ross believes in tough love. He’ll say “OK, well we just gotta get over this and deal with it.”
We depend on each other. In 2011 I lost an eye to a melanoma. I drive to appointments during the day, but Ross drives at night.
The medical staff and all the specialists have been wonderful and the Fabry Australia support group has been a great support to us.
We are always hopeful that one day there will be a cure for Fabry.
I have a daughter, Ashleigh, who’s 26, and I hope she’s not impacted by Fabry as much as Ross has been. We don’t keep anything from her.
Ross has been on enzyme replacement therapy a long time. And I know there are new treatments coming. I hope treatments become easier, if not a cure.