meet Jace

In October 2009 our son, Jace, was diagnosed with Hemophilia A, a rare bleeding disorder that results in an inability for his blood to clot on its own. Most of us have 50-150% of the clotting factor in our blood, our little guy has less than 1%. There are different levels of hemophilia: mild, moderate and severe. Jace’s is severe, which is the most common form of hemophilia.

Most likely the bleeding disorder was caused by a spontaneous genetic mutation, as there is no family history of the disorder. 80% of the time this is hereditary and only 20% of the time it is caused by a gene mutation. There are only 150-300 children diagnosed with the bleeding disorder each year in the United States.

This is a lifelong disorder, but one that has made significant advances over the past fifteen years. Jace visits an outstanding team twice a year at Mott Children’s Hospital at the University of Michigan. Preventative medication is the key. Jace has a mediport in his chest just under the skin where we infuse him three times a week with the factor that he needs to keep his clotting levels up. He will have the mediport for a couple of years then we and eventually Jace will deliver the factor intravenously.

Jace has had minimal hemophilia related setbacks and his spirit doesn’t seem to be affected. Our five-year-old son, Trent, has accepted Jace’s medical routine and it is normal in his world. He is learning the hemophilia language and is involved by his request when we infuse Jace at home.

We anticipate difficult conversations with our boys down the road and learning curves for Jace as he learns how to understand and manage his body. However, Jace’s future is bright and he too will be molded by this journey. We both firmly believe this was far from spontaneous—we were hand picked for this adventure.

If you would like to know more, we recommend the Mayo Clinic website.