To our TCR famz,
If you’re reading this, then you have visited our Espresso Bar and sipped on our dream, The Chamber Room Espresso & Brew Bar.
You have personally got to know myself (Kristy), my husband (and business partner) Jason and our incredible team.
You may or may not know that my health has declined rapidly in the past couple of years which forced me to take a massive step back from TCR.
Jason and I are pretty private people but we feel we are ready to talk about my illness and share it with you.
For the past two years we have been searching for answers with a local Neurologist and after ticking off many tests, scans etc, in May this year we finally found out what is happening to me.
I have been diagnosed with a rare form of Congenital Muscular Dystrophy. A group of genetic diseases that cause progressive weakness and loss of muscle mass.
The disease I have is called Collagen Type IV Congenital Muscular Dystrophy. It is so rare that DNA testing took months and when the results finally came back my Neurologist, nor any other doctor in Cairns had heard of the disease.
The progression of the disease is quite rapid as a mere three years ago I was working as a barista alongside our team serving up the brews and treats you have grown to love... I now cannot walk unaided. You may have seen me walking with a 4 wheelie walker and recently I received a custom made wheelchair.
We have been eagerly awaiting an appointment to see a Myologist interstate and will be flying to Sydney this week to see a Professor of Myology and a team of doctors. The time has come to learn more about this disease, provide genetic testing and hopefully slow down its progression.
This means we will have to close TCR from Monday 14/10/19 - Wednesday 16/10/19
We thank you for your understanding during this time & we will see you when we return...
Jason and Kristy Greenardi