J & J's Journey




I'm a single mom of three children. My two oldest children suffer from a life threatening illness called Cystic Fibrosis. Because of their illness I'm at home with them full time.
CF affects the whole body but mainly the lungs and digestive system. CF causes reoccurring lung infections causing mucus to build up in their lungs where certain bacteria grows. CF people have to take pancreatic enzymes to digest their food as they don't have enough enzymes in their body. There is NO cure!
My son Jaydn is 18 and my daughter Jelena is 15.
They have been in and out of the hospital all there life due to lung infections and poor lung function.
CF affects everyone differently.
Jelena has it worse than Jaydn.
She has had numerous surgeries and goes in the hospital every three months for IV antibiotics just to keep her alive.
She has a permanent feeding tube in her stomach for constant feeds to help her gain weight.
Last fall she got very very sick and her Pulmonary function numbers dropped to 30%.
She is now being very closely monitored by the transplant team at the Edmonton stollery children's hospital. It's 8 hours away from our home. She can not go into any public place with lots of people because that's a chance of her catching a virus and at this point any virus can be very harmful or fatal for her. 
We are living one day at a time and basically living our lives in limbo because we really don't know what the next day will bring.
Cystic Fibrosis is a horrific disease. My children do not let CF define them but it's hard when their daily lives consist of numerous medical needs such as chest physical therapy, inhaled meds, taking pills, trying their hardest to stay active. This is very time consuming and takes up most of their day. 
We travel back and forth to Edmonton to get the best care the need. It gets very costly and very stressful on our family when we have other things to worry about. We were told when the time comes where Jelena gets the surgery to get new lungs we need to live in Edmonton for at least 6 months post surgery. Possibly longer.
We will never understand why god gave us this life but we stay positive through all the pain and suffering. We do believe in miracles.