Justin is a single father, a patient and an advocate diagnosed with CLOVES Syndrome. He is 40 years old and has lived with this disease since birth, but was only diagnosed with CLOVES two years ago at Children's Hospital in Philadelphia. Previously diagnosed with Lymphangioma and Klippel Trenaunay Syndrome, Justin has been treated his entire life for a disease in which doctors in both holistic and western medicine fields have had little to no answers. Most of them: perplexed! Throughout this long and tenuous journey, Justin has had 18 surgeries in his life ranging from craniofacial, debulking, sclerotherapy, CO2 laser and more.
Justin's diagnosis with CLOVES has been a life-changing experience for he and his family. Now in his second year of Sirolimus therapy, he and his Oncology team at CHOP have reported significant progress and have confirmation that this therapy has shrunk some of his most problematic lymphatic malformations.
Because of being sick and unable to hold down various jobs, it was in direct correlation with CLOVES that Justin founded his own business at the age of 17. For 15 years, he was both Publisher and Editor-in-chief of a multinational music magazine that he started in his bedroom. At the age of 25, Justin went on to sign an exclusive distribution deal that would find his pet project in Borders, Barnes & Noble, Tower Records and hundreds of Mom & Pop book and record stores in over 25 different countries.
Returning to finish his degree in Disability Studies, his goal is to work with children and adults both with rare and terminal diseases. Justin will proudly tell you himself that finding the CLOVES community has been the biggest single improvement of his life and hopes it becomes yours as well. Justin says that his single defining moment as a parent was being able to take his seven year old daughter to meet other individuals affected by her father's disease. He says that it has helped instill true empathy in his daughter and brings his life-long battle with this horrendous disease full-circle.
Jenny Padilla is currently a stay at home mom, but was previously a NICU nurse. Her son Victor is almost six years old. She was able to attend the conference in Boston, when Victor was just 6 months old and was amazed to meet other children, teens and an adult with CLOVES. Jenny quickly realized that she could help support the organization through fundraising and by raising awareness. Jenny has organized many small and large fundraisers and has been a great resource for other families who want to participate that way. Jenny says that her family has used CLOVES Community at times when they needed emotional support or help navigating life with a sick child. Jenny says that she couldn’t imagine life without this wonderful community, and their support towards all involved. This is the primary reason she has chosen to join the Family Advisory Council.
Diagnosed with CLOVES at age 14, Lindsay has been involved with CLOVES Syndrome Community ever since. Now several months out from graduating from the University of Pittsburgh, she works as a Medical Social Worker in Pittsburgh, PA. Lindsay is dedicated to spreading awareness about CLOVES and advocating for this syndrome and for those affected. She is dedicated to making connections with other patients and families and values the relationships made within CLOVES Syndrome Community.
Learn more about the Family Advisory Council here.