If you’re reading this, then you have visited our Espresso Bar and sipped on our dream,
The Chamber Room Espresso & Brew Bar in Village Lane, Cairns.
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 and I have been unable to work in our business.
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 Cairns top Neurologist and after performing 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 VI 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 has shown a rapid decline 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 because of the muscle disease. You may have noticed me walking with a 4 wheelie walker (that I rock by the way!) and recently I received a custom made wheelchair to help manage my chronic fatigue.
We recently flew to Sydney to see a team of Myologists who examined me and explained the disease in full. They say knowledge is power and it sure is true because now understanding this disease has given me control back!
A medical plan is in place (loads of tests) to monitor my muscles decline as it has already attacked my hips, legs, feet then shoulders and arms. It will then progress to attack respiratory including breathing, lungs, heart and throat/swallowing.
What we have learnt is to live for each day and make the most of what we have right now because the disease will progress as my muscles will get weaker and weaker.
Asking for help is a difficult position for us to be in as we are so independent but we recognize that we cannot do this alone anymore and we need the support and love of our community...
All our black love,
Jason & Kristy Greenardi