The story of Kylie Fisher-Davis
Jack was born almost 16 years ago in what was a seemingly normal elective caesarean. Prenatal care was all showing a healthy growing boy. Well delivery day certainly changed the course of my 24 year old life forever. He was a very unwell little baby who failed to thrive for the first 6 mths of life in and out of hospital. This tiny helpless little bub named Jack would go on to spend the next 5 years searching for a diagnosis and fighting to survive. He was in his first year of school when it was finally found after countless surgeries, procedures, hospital stays and tests that our little guy had a microdeletion and duplication on chromosome 13q. The geneticist explained that in all the medical literature there has never been a case such as this diagnosed. Hence there being no medical information they could provide us with and no ‘name’ for Jack’s condition. Still to this day that has not changed. This boy despite all his barriers has fought through many illnesses such as a brain cyst , swallow difficulties, liver disease, growth and weight challenges, immunity issues, hearing and vision loss and now ongoing muscle and bone deterioration. But everyday- he wakes up with a smile on his face, the most beautiful, loving personality and a constant desire to please. He loves balls, footy, MMA and anything wrestling related. I went from a young 24 year old mum with a whole list of dreams for him and his typical development to an experienced special education teacher studying speech pathology and fighting for inclusion for all students with a disability. I love my life, I wake up everyday feeling so lucky that I have Jack and each day try not ever to take for granted the blessing he is and for each day I get to be here with him doing life. I spend most of my days trying to make sure he feels the same, has the best opportunities presented to him and gets everything he wants or needs to live a happy, successful life.