Isaiah's Story

Isaiah Evans was born February1, 2016 to Janelle and Ken Evans. It was apparent upon the 20 week ultrasound that Isaiah had club feet but more health issues were made apparent after Isaiah was born. Consequently, due to these health problems Ken and Janelle have not been able to live at home with Isaiah. Not only does Isaiah have club feet but he also has a dislocated knee and dislocated hips. Isaiah was diagnosed with Arthrogryposis which means he was born with joint contractures. This means some of his joints don't move as much as normal and may even be stuck in one position. Often the muscles around these joints are thin, weak, stiff or missing. Isaiah will need numerous castings and surgeries on his legs, feet, and hips. He will also need frequent visits to Wascana Rehabilitation Centre to work on improving his range of motion. Presently, Isaiah is staying at the Weyburn Hospital and Ken and Janelle are driving him to Regina General on a weekly basis. It is expected that these weekly trips will continue for years to come. Another major issue that Isaiah was diagnosed with is called Pierre Robin. This means he has a small chin or jaw line and a normal size tongue. Isaiah was having difficulty breathing due to his tongue occluding his airway. Isaiah spent the month of March at the Edmonton Stollery where he underwent two surgeries; one to adhere his tongue to his lower lip and one to place a trach. Isaiah and his family will be required to travel to Edmonton at least every three months to have the trach assessed by a Pediatric Ear Nose Throat surgeon. It is unknown at the time how long Isaiah will need the trach. The trach causes Isaiah to have issues swallowing so he cannot eat on his own. On June 13th, 2016 a G-tube will be surgically placed so food can be placed directly into his stomach. He has been using a nasal gastric tube. Another symptom of Pierre Robin that Isaiah has is a sub mucosal cleft palate. This affects his soft palate. He will need another surgery around a year of age to deal with that. Isaiah's journey has been filled with many smiles and tears. This journey is not a sprint but a marathon. The cost of fuel, hotels, plane trips to Edmonton, food, etc. continue to accumulate for the Evans family. If you are able or willing to help they would be grateful. Thank You.