Monty, or “The One & Only” as we lovingly call him is 14-yrs old, and a lover of all things John Deere and Alligators. He has a unique perspective on life and enjoys every day. As a baby, Monty had severe reflux, had trouble staying warm, began to have seizures, missed milestones, and was labeled as failure to thrive. We spent his first 18 months struggling to figure out how to help Monty. We took him to see several GI doctors, allergists, neurologists etc… At 18 months Monty got a G-tube to try and help with his reflux and to get him more nutrition to help his failure to thrive. Monty continued to struggle, and we were referred to Cincinnati Children’s Hospital. There we got set up with a great team of doctors who were able to start diagnosing Monty’s issues and help get him on the right track. Monty was diagnosed with Eosinophilic Esophagitis, Autism, Osteopenia, Immune dysfunction, Dysautonomia, and a Seizure Disorder and that was just the tip of the ice burg.

At two years old Monty was put on TPN. TPN has greatly improved his quality of life. After further testing, Monty was also diagnosed with Mitochondrial Disease. Monty is still on TPN. He can’t tolerate traditional lipids and is currently taking part in a trial of Omagaven which has helped him immensely. Monty has a Central Line, a GJ tube, and an ileostomy. Monty is on many IV medications, inhalers, and needs oxygen when he sleeps. He is also steroid dependent. Everything is a very delicate balancing act, and he is no stranger to hospitalizations. Monty gets tired very easily. He can walk very short distances, but needs to use a wheelchair when we leave the house.

With all that Monty goes through, he doesn’t see himself as sick, he says “I’m not sick, I’m Monty!”