Victoria Schiano (Downingtown, Pennsylvania) is the mother of Cole, who was born with a progressive disease called Mitochondrial Disease that impacts most of his organs and his energy production. While he’s a very typical 5 year old boy who loves exploring the world, he also has a central line in his heart that delivers life-saving nutrition and medication 24/7, a Gtube and a Jtube in his abdomen that allow us to relieve pressure, deliver rescue medication, and even nutrition, an internal stimulator device that allows his bladder to function, and a Dexcom to monitor his blood sugars every 5 minutes and alert us to lows and highs. He has 30 specialists at Children’s Hospital of Philadelphia and 4 therapists he sees weekly, as well as homecare shift-nurses 20 hours a day to provide the hospital-level care he needs to be home and in his community. Cole is on numerous life-saving medications- 3 just for his genetic seizure disorder that would cost $6,426/month without coverage. He’s dependent upon Total Parenteral Nutrition to be delivered through his central line 24 hours a day which costs about $18,000/month without coverage. He’s on 14 other medications that also help keep him alive and stable that would cost around $5,200/month without coverage. This doesn’t even include the cost of the supplies to deliver those medications or the nursing required to maintain and observe delivery.