Team Captain, Stephanie, and her family joined the Unite for Bleeding Disorders Walk in 2019 under the name Sammi’s Supporters. This will be their third time walking with the community! This year, they’ve changed their team name from Sammi’s Supporters to Factor 5 to celebrate Samantha, Stephanie, and their newborn son, Lev. All three members of the family are diagnosed with von Willebrand Disease!
Samantha had bruising at 5 weeks old and was officially diagnosed with VWD at 18 months. “It was not a fun experience to say the least,” Stephanie says. “… but it’s been very manageable. I was honestly relieved to have a diagnosis for Sammi. We learned what it was and figured out how to treat it!” Lev showed signs of VWD at 8 days old because of prolonged bleeding, and while the family had genetic testing done, he will likely be formally diagnosed at age two.
Now, Sammi is an active 3-year-old who loves dancing, jumping off the couch, and getting dirty! Stephanie says even with their diagnosis, they live 100% normal lives. Their day-to-day doesn’t look much different than any other family. “In the dry winter months, we apply Aquaphor to Sammi’s nose to prevent nose bleeds and she sleeps with a humidifier. Sammi wears her medical ID bracelet wherever she goes. We also carry tea bags with us and a nasal spray in case of an injury. Remember, tea bags clot bleeding!”
After Sammi was diagnosed, Stephanie found WPCNHF and our bleeding disorder community through Facebook. Throughout the pandemic, Stephanie and her family participated in many of the virtual education events put on by the Chapter. A few of their favorites were baking cookies for Valentine’s Day while learning about the clotting process and joining via Zoom for a community board and brush paint night!
“[The Chapter] answered so many of the questions I had…,” Stephanie says. “They’ve taught us so much – and with such a positive spin that my 3-year-old cannot wait to grow up and become a Hematologist! Having a supportive community really changed our families outlook on our disease.”
Team Factor 5 enjoys walking with family and friends to show their support for the bleeding disorders community. Stephanie adds, “It also gives my kids something exciting and positive to look forward to, when having a bleeding disorder isn’t always fun.” For Samantha and her big brother, Micah, one of their favorite things to do each year is design their team t-shirts to wear to the walk. We can’t wait to see what they come up with this year!
“We are so thankful for WPCNHF. Between the help they provide, whether it be financial, knowledge or fun – and everything in between, we are so happy to have found this community! Please sign up for the Walk! Its easy, fun and whether in person or virtual this year, it’s a great way to get involved!”