Kade (4yo) and Jayce (2yo) are cousins that share a rare genetic immune deficiency called X-linked Agammaglobulinemia (XLA).
Kade was born in December, 2016. He spent his first Christmas sick at only 3 weeks old, but at that time we didn’t think much of it. He had a few illnesses throughout his infancy, and then things took a turn for the worse when he was 9 months old.
At that time Kade had minor surgery for an abscess, and after that it was one illness after another. It was never just a minor cold, and would usually end up with a trip to the emergency department. He would struggle to overcome every illness, and it felt like he spent more time sick than he did healthy.
When Kade was 15 months old he had back-to-back infections with Croup and RSV that left him struggling to breathe. At this point we had felt that something wasn’t right for a while, and although we were reassured that everything was fine, this made us push for answers. When his bloodwork results came back something wasn’t quite right, and again we were told that it was nothing to worry about. We pushed for more bloodwork, and those results led to a hospital admission. This was the best thing that could have happened to us. We met Kade's new pediatrician and after learning about his history and running some specialized tests, he was diagnosed with X-linked Agammaglobulinemia at 18 months old.
The diagnosis led to some genetic testing, which determined that both of us moms were carriers. Jayce was born in February, 2019. He was tested, and diagnosed with XLA at birth.
XLA is rare a genetic (inherited) immune system disorder. Because it is X-linked, it occurs almost exclusively in males, with females being carriers and showing no symptoms. XLA patients lack the ability to produce antibodies to fight infection. Patients with untreated XLA are prone to develop serious and even fatal infections. It is treatable with immunoglobulin (antibody) infusions, and with it, XLA patients may live a relatively healthy life.
The boys are unable to receive vaccinations as they do not produce the corresponding antibodies needed for protection, and some vaccines can even be life-threatening to them. We rely on those around us to keep up to date with their vaccinations, and to stay away if they are sick. A simple illness to most could potentially be a serious illness for our boys.
Kade receives monthly intravenous infusions of immunoglobulin (IVIg) at the children’s hospital, while Jayce receives weekly subcutaneous infusions (SCIg) in the comfort of his home. These infusions provide them with antibodies from human donors, and help to reduce the severity and number of infections. They will need these infusions for the rest of their life, but we are hopeful that one day there may be a cure. In addition, they have regular blood tests done and are followed by a pediatrician in Saskatoon as well as immunologists out of Alberta Children’s Hospital.
Both boys are thriving since beginning treatments. They don’t let anything slow them down, and you would never know to look at them that they fight this invisible illness.
To Contact Jess, please visit her Instagram @9_jess_