Our adopted son was diagnosed with isovaleric acidemia at birth. This is an incurable disorder that can be managed with a low-protein diet and supplementation of essential amino acids with a special formula, manufactured only by Abbott Laboratories. Without this supplement, he could not survive. During his early childhood, my employer-provided insurance allowed for medical nutrition support only up to a certain age, yet denied coverage thereafter because the formula was not considered to supply a necessary percentage of his caloric intake (an irrelevant concern in this instance). The lack of medical and scientific understanding of his disorder demonstrated here was breathtaking. We were fortunate to have Medicaid support because he is adopted, and are fortunate to now have a different employer-sponsored health insurance provider with a better understanding of the disorder, but we are concerned for his options as an independent adult.
- Lucas, age 18 months
- Sebastian, Age 25