About Jack Kowal
Unfortunately the odds were stacked against Jack Kowal from the day he was born on September 30, 2005. After just five weeks he was diagnosed with Pyloric Stenosis, a condition that prevents food emptying from his stomach. While surgery corrected the problem, this heralded the beginning of a long, harrowing road for Jack and his parents, Jo and Daniel.
Jack began to stop breathing. Diagnosed with sleep apnoea (where the brain temporarily stops sending signals to the muscles that control breathing) he spent the next year on oxygen 24/7. His physical and mental development slowed. His eyesight was extremely poor and he had no muscle control so he couldn't sit, stand or even hold his head up.
Doctors thought Jack had the progressive neurodegenerative disorder Leigh's disease and being so young and with such severe symptoms, would probably only survive until he was two. After some months a specialist in this field saw Jack and discounted Leigh's disease. While it was an enormous relief it still didn't answer the question - what was wrong with Jack?
Numerous head and spine scans, X-rays, MRI scans, EEGs, lumber punctures, genetic tests, DNA tests and countless blood tests later there is still no diagnosis. Further to his physical and mental disabilities Jack suffers from scoliosis and was also having between 7 and 12 and tonic-clonic seizures a day, leaving him completely incapacitated.
For several months, Jack had a body, but no personality. He didn't laugh, cry, or make a noise, was completely expressionless and slept most of the day. Jack was just a body with no soul. Thankfully medication has brought his seizures down to one per week and his beautiful smile, laugh and cheeky personality have returned.
But there is still no diagnosis. And without one, health care professionals can provide only limited treatment and prognostic information, hindering access to information, support and services. So Jack is labeled as being severely disabled and suffering from Global Developmental Delay. He undergoes intense physiotherapy, occupational therapy and hydrotherapy to help his physical development.
Jack is now a four year old who can't walk, talk or do things as simple as feed or dress himself. He is completely reliant on his parents and carers'. Jack's life and the lives of those who love and care for him would be made infinitely easier with a purpose-built wheelchair and a vehicle that's been converted to transport him. But this will cost $47,000.