When my son, Dakota, was born, he sustained an abrasion that bled for more than 30 hours. Dakota was taken to the NICU for tests, but there were complications every time the staff drew blood. Finally, we were referred to the only coagulation lab in our state. When the doctor called with the results, he said that Dakota had less than 1% factor VIII. Not understanding, I asked, "Is that good?" He said, "No! Your son has hemophilia." I was devastated.
More than a year later, our HTC was enrolling Dakota in a study and needed his current factor levels. The test results were confusing, and retesting didn't make things any clearer. After discussing my son's different bleeds, the hematologists decided to order a von Willebrand panel. Dakota's von Willebrand levels were unmeasurable, his factor VIII was less than 1%, and he was re-diagnosed with VWD type 3. Doctors explained that the only way for a child to have type 3 VWD is for both parents to have a form of the disease. Neither my husband nor I knew we had VWD type 1, and we were flooded with guilt knowing that we were the cause of our baby's pain and suffering.
Dakota, who is now 15 years old, has had his ups and downs with VWD and has asked, "Why me?" more than once. Overall, though, Dakota wears his disorder with pride, educating area elementary and middle school students – and anyone who asks – about VWD. When I recently asked my son if he wished he didn't have a bleeding disorder, Dakota responded, "No. The connections I've made and the people I've met because of VWD mean more to me. It's made me who I am."