My Daughter Breeze Porter is 14 months old. She was born with a rare metabolic disorder called PKU. This disorder was diagnosed by the mandatory new born screen heel prick when she was two days old. Breeze's body does not break down protein like the rest of us and if left un-diagnosed she would have become brain damaged by the build up in her system. Thanks to the test, we caught it early and she will go on to live a normal life, but she does require a special diet. Although by law we were required to find out she has this disorder, it is not the law for insurance to cover the cost of her medically prescribed food and formula that she is required to eat/drink for life. The cost of low protein food is not the same as what I would buy for myself at the grocery store. A loaf of lo-protein bread is $15.00, a bag of lo-protein pasta is $10.00! In order for Breeze to grow up healthy and be a contributing adult she has to have this special diet, with out it she could be costing our county hundreds of thousands of dollars by needing to be institutionalized. This country has done a good job taking care of our newborns by mandating the newborn screen, but not taking complete care. By not mandating the coverage of the medically prescribed food they need based on the results of this test. Please do what is right for this small but significant group that needs your help. You are the only ones who give us a voice that is heard. Thank you for your time.
Seriously how can you not copy and paste for this sweet face!
