Beyond the Bubble
Tony's son Andrew had problems from birth. Although his doctors ran many tests, his illness remained a mystery. When he was about one and a half, a teacher in his daycare was afraid that Andrew's bruises were the result of child abuse and informed the family that they were going to be reported to the authorities. “It was terrifying. We were so afraid that social services were going to come and take our kids. But eventually we got it worked out, and finally we also got a diagnosis for Andrew.” At almost three years old, Andrew was diagnosed with Type 2A von Willebrand Disease. “We had no family history of bleeding disorders, so it was a shock.” Andrew was a very active child and always wanted to keep up with his brother. “Andrew wanted to get out and play like other kids. But he started to develop problems with his knees. Sometimes we needed multiple infusions to stop a bleed. And this would go on about two times every month, sometimes more.” Tony and Deb would end up having to take him to the ER for treatment, which was both stressful and time–consuming. “We were very concerned about Andrew's safety. We tried to keep him in a bubble at first. But you can be too cautious. You have to keep on living and you have to let your kid be a kid. So, we became very skilled at dealing with emergencies.” Tony and Deb were determined to find a good solution for their son – one that would give him the freedom to pursue his interests while safeguarding his health. And they were successful. As a Factor My Way Patient Educator for Octapharma, Tony is eager to share his family's experience and pass along what they have learned.
Life on Hold
When Andrew was diagnosed with VWD, he was started on an antihemophilic factor/von Willebrand factor complex “as needed,” an on–demand treatment regimen that would continue until he was about 11. Unfortunately, it was unreliable bleed control at best. “Because of the bleeds Andrew wasn't able to be a typical active boy. It was as if his life was on hold.” Then, at age 12 Andrew began to complain of knee pain. “We searched for answers, and our Hematologist decided to do an MRI to see if he could figure out the bleeds. He discovered that Andrew had a torn meniscus in his knee, an injury that would require surgery.” With Andrew's VWD, it was essential to find a way to control any bleeding associated with the knee surgery. “Our doctor asked if we would be willing to try wilate® as part of a clinical trial. We did our homework researching wilate and learned that it was developed specifically for VWD, unlike some other treatments that were originally developed for hemophilia. After much discussion as a family, we decided to participate in the trial. We are so glad we did.”
A New World
As it turned out, treatment with wilate changed Andrew's life, and the Basa's family life, for the better in several ways. It freed them from constant worry and repeated trips to the ER. With wilate, all of his treatments are done at home with very successful bleed management. With wilate Andrew was able to become the “normal” kid he always wanted to be. “He turned into a totally different kid. He could play sports with his brother. And he wasn't timid like before. Because he felt protected and just generally felt better, he became confident and unafraid.” At about age thirteen, Andrew began to self–infuse. “We were so proud of him, we cried. He was achieving the independence that he craved and that we always wanted for him.” At seventeen he took on the responsibility of managing his own care – ordering supplies and maintaining his regimen independently. Today, at nineteen, Andrew thrives on his independence — driving, biking, hanging out with friends, working as a counsellor to kids with bleeding disorders, and entering trade school to become an HVAC technician. Finding the right medication made all the difference to Andrew and his family. “VWD is such a struggle. It takes an emotional toll on the entire family. Wilate has dramatically improved things for all of us. We are 100% behind wilate because we have seen what it can do.”
Sharing His Experience
“Hearing that your kid has a diagnosis of VWD can be frightening and overwhelming – believe me, I know.” That's why Tony became a Factor My Way Patient Educator. He is eager to share his experience, answer questions, and help find solutions for bleeding disorder patients, caregivers, and their families. “My best advice is to take one day at a time – and to live your life. Don't be afraid to ask questions and speak up for yourself. Don't be afraid to ask for help.” Today, Tony could not be prouder of the entire Basa family and the self–reliant, active young man that Andrew has become.
