Tyler began getting sick at age 4 eating normal food. We went through three large healthcare institutions in NC where we live for help. After 1 year of illness, our second medical institution finally scoped the esophagus to find EoE. We spent the next year trialing failing treatments. After the third large medical institution failed, Tyler was too sick to attend school and was failure to thrive losing 8 pounds. We kept removing foods to no avail. We found Cincinnati Childrens Hospital and went to the Center for Eosinophilic Disorders. They put him on elemental formula only. My son refused a G tube. Remarkably, he drinks it. We do not have a G tube, so insurance will not pay. This formula does not taste good! After 1 month of being on elemental formula, Tyler began to heal. My 6 year old little boy starting thriving again. He gained 13 pounds in 6 months. he does food trials. After 1 year on food trials, he has four safe foods; white potatoes, turkey, chicken, blueberries. Tyler has returned to public school. He has play dates and loves to go fishing. This elemental formula saved his life! The down side, we have to drive to Cincinnati Childrens for care every 3 months. It is a 7 hour drive from NC. We pay for 3 day hotel stays each visit because of his appointments. Adding to, the expense of medical formula is financially debilitating. Family vacations suffer. Saving plans suffer. Retirement plans suffer. We have to pay to feed our son. By passing this new bill, it would change our life!! Imagine what a family of 5 could do with an extra $1,200 a month.
Patients & Providers for Medical Nutrition Equity
Working to secure access to medically-necessary nutrition for all.