Having three children with PKU is an unbelievable blessing. We had never heard of PKU before Zach was born and just a few days after he was born, we were thrown into the deep end of the PKU life. When Madie was born, we knew there was a chance she would have it, but we were shocked when the test came back positive. When we adopted Kai, we knew we needed to adopt a child with PKU because we knew the diet and the medical tests. Having 5 children and 3 with PKU is overwhelming to say the least. There is rarely a month that goes by that we’re able to spend what we need to on their low protein food because of the cost. Without that food, there would be severe medical implications, but the cost is astronomical. Having help with the food would give our kids a chance to eat healthier and ultimately give them a better chance at a healthy life. Right now, Children’s Special Health helps us with our medical formula for our three children with PKU but does not help us with the extreme financial costs of purchasing low protein food.
- Caroline, age 18 months
- Contact your Representatives and Ask Them To Co-Sponsor HR 2501