James’ Journey

Jonathan and Viki Steege married after meeting while serving in the Army. Both were deployed to Iraq and served their country before returning to civilian life and starting a family. They were blessed with a son and daughter a few short years after marrying. Their daughter, Emma, began showing signs of development delay, both physically and mentally, so they sought out answers. After countless doctor visits and tests, Emma was diagnosed with a rare genetic disease known as CDG. CDG is a Congenital Disorder of Glycosylation which impairs the production of glycoproteins. CDG effects can be blindness, limited motor skills, developmental delays, limited body function and can be life threatening. Many CDG patients are wheelchair-bound for life. . There are little known cases in the world and very little known or understood about the rare disease. The Steege family moved to Texas where they could be near Cook Children’s hospital to get their daughter the best care available. After numerous surgeries and and countless hours of therapy, Emma started to show remarkable progress. She was able to lift her head and sit upright on her own after years of struggle and now, she has even started to walk with aid, a feat seemingly impossible at 5 years old. All the while, her older brother, James, was protective and supportive of his sister. James is two years older that Emma and has taken pride in helping his parents take care of Emma. He had seemingly limitless energy when it came to his family and, in addition to his loved soccer, he always had time to play with and entertain his sister. Recently, James started experiencing unusual pains and his family took him to the hospital where, in just a matter of hours, their world was turned upside down at the discovery of James’ Acute B-Cell Lymphoblastic Leukemia. Doctors began treating James with chemotherapy immediately and advised the Steeges that James must remain in the hospital for at least a month and will not return to school or normal activity for a year, provided he can achieve remission. The Steeges now have to coordinate their schedules to accommodate treatments for both of their children and are unable to even take a second to breathe. Their world was turned upside down but they have remained positive and faithful in God’s plan through it all. The outpouring of support for this family has been astonishing but the battle has just begun. The treatments necessary for both of their children are extremely expensive and the medical bills are continuing to pile up. James will have over three years of treatment ahead of him if all goes according to plan. We would like to help these heroes through the traumatic time they are experiencing and help them focus on keeping their children comfortable as well as helping them continue to fight. Please help them in any way you can. Thank you.