When our beautiful daughter Leia was first diagnosed with DC our whole world was turned upside down. We didn’t know what to do or what we were up against. Our hearts were broken and lives shattered. As parents we fight and work hard to ensure our children are safe, healthy, happy, secure and provide them with unconditional love. Being such a rare condition we found it challenging, painful and heart breaking to understand and accept. We couldn’t help but ask why and how. Although our family and friends have provided such unconditional support we still felt lost and helpless as we tried to understand and navigate this new world.

Then we met team telomere and all the selfless doctors and researchers who work tirelessly to provide support , hope and advancements for the TBD community. They all give us the hope, support, love and the tears we need to keep moving forward and a shoulder to lean on.

Our daughter Leia has become my everyday hero and life inspiration. Although she struggles and lives with her condition, she is a fighter and a determined fierce strong girl. She is always laughing, playing, learning, exploring, and just loving life. Not to mention always dancing. She loves to dance!! She is so full of life and doesn’t allow her condition to define her or her life. Her strength and laughter is our inspiration.