Nemo Delgado has donated plasma many times. Nemo knows that his donations help the thousands of individuals with debilitating conditions who rely upon plasma-derived therapies for their lives and health. However, Nemo also has a very special and personal motivation for donating plasma – his 13-year old daughter, Daniela. Daniela has severe von Willebrand Disease (VWD) Type 1C and Ehlers Danlos Syndrome, both debilitating conditions. VWD is a genetic condition like hemophilia that can cause uncontrolled bleeding, joint damage, and other complications. It is a lifelong ailment and there is no cure. Daniela’s VWD is treated with regular intravenous infusions at home of a clotting factor made from donated human plasma. Without these donations, the medicine Daniela uses would not exist.
Nemo and his wife Janine, who also has VWD and uses a plasma-derived product, have helped inspire Daniela to use her conditions as a force for good. When she was only four years old, she realized that other kids with life-threatening illnesses or disabilities often need something to smile about. She decided to create special, beautiful customized cakes and present them at no charge to deserving children. Nemo and Janine are avid bakers, so it was no surprise that Daniela chose baking cakes as the delicious means to her important mission. Today, through Daniela’s Little Wish (www.danelaslittlewish.org), the organization she founded with her parents’ support, Daniela continues to bake and present cakes while also giving motivational talks and cupcake workshops throughout the community and across the country.
Nemo, Janine, and Daniela are also involved with the Coalition for Hemophilia B (www.hemob.org), some of whose participants have VWD. The Coalition for Hemophilia B’s mission is to make the quality of life the focal point of treatment for people with hemophilia B and their families through education, empowerment, advocacy, and outreach. For 30 years, we have driven our mission through a family-oriented approach, because hemophilia affects the whole family. Our programs bring patients with hemophilia B together from all over the country, connecting them with their common bonds, empowering them to gain support and lifelong friends, and giving them the knowledge needed to make important life decisions. Some of our programs include an annual patient Symposium, Men’s & Women’s retreats, regional Family Meetings on the Road, programs for kids, teens & other targeted populations, the Beats music program, scholarships, publications including Hemophilia B News, a robust social media presence, and many more. Recently, Daniela led a virtual cupcake-making workshop for families in our community. The Coalition has strongly supported the Delgado’s efforts in a variety of ways and is proud to have nominated Nemo Delgado as our Plasma Hero.