It is 65 Roses Day today, which is about raising awareness for Cystic Fibrosis.
One of our clients is facing this very condition in their family, so we wanted to do our bit to raise awareness.
I asked my client a few questions below…
WHAT IS CYSTIC FIBROSIS?
Cystic Fibrosis is the most common life-threatening genetic condition in Australia.
It primarily affects the lungs, digestive system and reproductive system.
WHAT ARE THE MISCONCEPTIONS THAT PEOPLE OFTEN HAVE ABOUT THIS CONDITION?
Many people ask me if she will grow out of the condition or if she is learning impaired, the answer to both questions is NO! People often remark too that she doesn’t look sick, but the disease affects them from within with few outward indicators.
HOW DOES YOUR DAUGHTER MANAGE LIVING WITH IT ON A DAILY BASIS?
A positive attitude and a sense of humor never goes astray. Management of CF is undertaken with a regime of medications, daily physiotherapy and a high calorie diet. She takes up to 30 tablets a day.
WHEREABOUTS DO YOU SEEK HELP ABOUT THIS CONDITION?
We regularly see Doctors at the Royal Children’s Hospital at clinics to monitor her health. Through the RCH we are in contact with Cystic Fibrosis Queensland who help with a number of services, including respite weekends for Mums, hire of equipment, sibling days and education programs to name a few.
WHAT ARE YOU MOST THANKFUL FOR IN YOUR FAMILY AND DAILY LIFE?
I am thankful that Caitlin is relatively well and that her condition does not impact greatly on day to day life. There are many families who have not been as lucky as us and have had more admissions to hospital than they care to count.
WHAT ARE YOUR HOPES AND DREAMS FOR YOUR DAUGHTER IN THE FUTURE?
I want Caitlin to dream big. If she wants to do something don’t let anyone, no doctors, friends or family tell her that she can’t do something but to get out there and give it her best shot.
WHAT IS THE BIGGEST THING THAT YOU LOVE ABOUT YOUR DAUGHTER?
Her tenacity and ability not to be defined or limited by her health condition.
WHAT IS HER MOST FAVOURITE THING TO DO?
Caitlin loves to play the flute, and will devour just about any book. She also loves to drive me crazy
WHAT IS THE MOST IMPORTANT THING THAT YOU WOULD LIKE PEOPLE TO KNOW ABOUT THIS CONDITION?
I want people to know that CF is not a death sentence and that everyone should consider organ transplant. It can give many, including children and adults with Cystic Fibrosis the opportunity to live life to the fullest – for the love of life!