Lilly was born with a rare genetic disorder, SCAD which is short for Short Chain Fatty Acid Oxidation Deficiency. This means that Lilly’s mitochondria cannot use fat as a source of energy to keep her  body’s organ systems functioning properly. This has led to spending half of every year in the hospital due to seizures, feeding intolerance, and illness her body cannot fight off. Lilly also has a cerebral folate deficiency which means her body does not produce enough of the folate neurotransmitter to keep her brain functioning properly, this has caused global developmental delay, autism, movement disorders and seizures. Despite all of her health problems, she has continued to grow, thrive and enjoy life. Lilly is beautiful, happy, and has the sweetest giggle you will ever hear.

 

 

 

To find out more about Lilly's condition check out this informative link:
 http://ghr.nlm.nih.gov/condition/short-chain-acyl-coa-dehydrogenase-deficiency

Photography by: Carrie Anne Miranda

Music licensed by Song Freedom: Beautiful Girl, Beautiful World