Beautiful baby Jaxson was born on June 5th, 2015 with no complications and a smile that could light up a room. 3 months later, what started as a hospital visit for what was thought to be just a common cold became every young family’s worst nightmare; an unfamiliar diagnosis and a sick child. Jaxson and Amber Arter were flown from Prince George to Vancouver to be tested at BC’s Children’s Hospital. It was here, after a battery of tests where they learned that he had Pulmonary Interstital Glycogenesis (PIG), a rare disease that had already begun to cause substantial damage to his lungs. An NG feeding tube was placed and months later a G-tube was surgically put in. Since it was flu season they were advised to be kept away from the public and other children so that he could grow stronger without risk of further infection. These efforts however were futile and Jaxson became ill again and was brought back to Children’s as he was having difficulty breathing. They did more tests and discovered he had caught two very serious infections; one of which was Cytomegalovirus (CMV). CMV is an aggressive infection that is not normally seen in children like Jaxson, which puzzled his doctors so genetic testing was done. It was found that he was born with severe X-Linked Hyper IGM syndrome, a genetic mutation that compromises his immune system making him unable to produce antibodies to fight off any sort of infection. This disease only affects one in a million boys and has forced him to become “the boy in the bubble”; in order to keep him away from the multitudes of bacteria and virus’ in the outside world that can harm him. Hyper IGM syndrome is so rare that the medical team at BC Children’s Hospital has never seen a case such as his and are consulting hospitals around the globe trying to find the answers. No one knows how this will play out, his future is not promised and his life may never be more than a sequence of tests and the boundaries of the hospitals white walls. He recently received a Bone Marrow Transplant (BMT), and while it is too soon to know if it was successful, it may be a step in the right direction of ensuring that Jaxson has a happier and comfortable life. If the CMV infection does not get better, Jaxson could remain on medication for the rest of his life. Jaxson is required to stay another 2 to 6 months in a germ free environment while he battles this cruel disease. The doctors have also recently found that his motor and verbal skills have also regressed and they speculated that he may also be Autistic.
The Arter family has been fighting this battle alone for too long and the emotional and financial burdens have compounded so greatly that they have finally agreed to let others help carry some of the weight. Many of his treatments such as BMT’s and medications are not fully covered by medical insurance. His Mom, Amber is a single mom who quit her nursing schooling in Prince George to be with her beautiful baby boy and is now living at the hospital full time. She is relying solely on Income Assistance to support Jaxson and is unable to work since she cannot place Jaxson in daycare due to the dangers of acquiring more harmful infections.
This amazing family is in need of any sort of assistance that you can find in your heart to give. Thank you so much for reading Jaxson’s journey.
- Peter Turgoose
- Elizabeth VanDyk
- Joel Sansome
- Amanda M Pletcher