Ted Deutch: “We can't let disputes over dollars and cents diminish the hope for more smiles and laughter from sweet children like…”

“We can't let disputes over dollars and cents diminish the hope for more smiles and laughter from sweet children like Jordan Ogman. This week, I visited 4-year-old Jordan to bring attention to the fight to save his life from a rare genetic disorder, TECPR2. Jordan's parents, David and Stacey, refused to view his diagnosis as a tragedy. They are inspired by his laugh, by his beautiful smile, and by his love for his family--especially his sister, Kira. They are ready to fight for him. The Ogman family is counting on Congress to do what is right. This Rare Disease Week, the 30 million Americans living with 1 of over 7,000 rare diseases are counting on Congress to invest in the research that can give them hope. Jordan's mom says: ``He is a warrior. He is resilient and bright, and we are fighting every minute to save his life.'' Congress needs to be there to fight alongside the Ogman family and every American family battling a rare disease. Jordan, you keep fighting. My colleagues, let's join this fight together. ____________________”