Our sweet daughter Noah was diagnosed with ECHS1 deficiency at 4 years old. This is an ultra rare genetic mitochondrial disease with less than 100 documented cases. It causes a buildup of toxic metabolites as our cells make energy, which causes damage and compounding problems over time. There is no cure- only symptom management. Amazingly, there is research being done at UT Southwestern to create a gene therapy for ECHS1 deficiency! It is being funded exclusively by parents of children with ECHS1, so we humbly ask for your help to raise money and awareness. Flowers for Noah came from the idea of a Black Eyed Susan that happened to have white petals- a difference in genetics that made it beautiful and unique...Thank you so much for your support, it means the world to us! To give directly to fund research, please see the link on the left side of the page. To follow Grant's substack, please visit grantwgoodman.substack.com.