Living Loudly NGLY1

Welcome! We’re Jess and Adrian, our daughter Elora was born with an ultra-rare congenital disorder: NGLY1 deficiency. This disease affects her nervous system and with only 70 cases globally, it’s difficult to predict the outcome. Some days are harder than others, but we’ve decided that we aren't going to live this diagnosis quietly... people should know Elora and our story of living with NGLY1 - from now on, we are going to LIVE LOUDLY! For anyone who wishes to come along on this journey with us, follow Elora's progress and support our family through the highs and lows, the laughter and tears, PLEASE SUBSCRIBE. Follow us as we navigate our way through life, a difficult diagnosis, and try to find strength, happiness and hope once more.