WFH NETWORK

Homemade jam, Pepaw, and hemophilia

Dylan DeMatteis, already at 15 years of age, is an aspiring filmmaker from Ohio who is an avid fan of rock and roll; he collects vintage vinyl and plays the drum with the same tenacity that he takes to the basketball court.

In his downtime, he follows the exploits of his favorite ice hockey team – the Lake Erie Monsters. The idle moments though are rare for this busy teenager as he pursues his dream of going to film school and traveling Europe to share his love of music and acquire the necessary life experience to write and direct great stories for the big and small screen. If that is not enough, he also finds time to manage his hemophilia.

While in middle school he noticed that his classmates did not understand bleeding disorders, a condition he has managed with the help of family and a dedicated healthcare team for as far back as he can recall. One of his earliest memories is receiving his “magic button”, a med-port he renamed much to the merriment of his family, who then marveled at his irrepressible spirit shortly after at a wedding where he danced the night away sporting a cast to allow a spontaneous bleed the chance to heal.

With a zeal for awareness raising and community engagement fostered by the memory of his grandfather “Pepaw” Charles Carmen (WFH president 1988-1993), he decided to bridge this gap by taking to the stage of his school to talk about his experience with hemophilia. He admits to believing his classmates would be ambivalent at best. To his pleasant surprise, his friends, old and new, all displayed a new level of understanding and care about blood disorders after his presentation.

Shortly after, their teacher tasked them with a project where they would manage all aspects of a small business from concept to production and marketing to sales. The students would choose one local charity where they would donate all their profits. After settling upon homemade jam as their product, Dylan’s classmates voted to donate all proceeds to the hemophilia community. Dylan was thrilled with their choice, recognizing that education and engagement are the best way to move towards the WFH goal of treatment for all. He is indeed an inspiration for the blood disorder community;   “My advice to someone else living with hemophilia is to think of it as a gift, making you stronger than most people, not as a curse that makes you weaker and don’t use it as an excuse for self-pity. My advice to a friend of someone with hemophilia is to support them and to help them by being a friend and listening.”

WFH donors support education and outreach programs across the globe. To find out how you can join the growing list of people who are choosing Treatment for All through financial support of the WFH, e-mail Interim Annual Giving Manager Roddy Doucet at [email protected]