It is really hard to have a child with a metabolic disorder. I pay over $600.00 per month for insurance coverage, It was prior to Obama Care $1200.00 per month. This does not leave me much funds left over to buy medical Nutrition food, my insurance covers the formula which is so expensive. There has been month’s where we did not have the extra funds to purchase the metabolic food and it has affected his ability to maintain his decent levels. Sabastian had a hard start since the hospital lock his PKU stick and could not find it for months even after he was lying in the hospital trying to be diagnosed. There has been several times during his life where i lost coverage for him which almost caused me to quit my job as i never could afford the over $600.00 a can his formula cost, he using two a day.
If we would have the right to order an cover medical nutrition it would relieve the fear and stress involved in managing his MSUD with out the coverage.