Madi is a 16 year old beautiful girl who has been ill since November 2016. She has been experiencing gastrointestinal issues with severe pain. She was unable to take in food by mouth and was provided needed nutrition through a tunneled power line in her chest and a GJ tube for feedings. Throughout multiple hospital stays and procedures the doctors determined Madi had Crohn’s disease, positive auto immune markers, tremors, migraines, pancreatitis, and more. As her health/pain continued to worsen Madi’s mother, Julie, and doctors continued to search for more answers. In February 2018, they discovered Madi had a very rare genetic mitochondrial disease, RRM2B, for which there is no cure. She was the 18thcase reported worldwide. Not much research has been done regarding this gene mutation. Since being diagnosed with RRM2B, Madi has experienced hearing loss for which she will need a hearing aid and ongoing GI issues. She underwent a difficult surgery in August 2018, to insert a J tube in her abdomen for feedings. With also having a GButton and a central line for TPN and Lipids in her abdomen, Madi is handling it like she always does, with great strength and an attitude of a champion which is an inspiration to all her family and friends.