Draegen, Age 18
When my son, Draegen, was younger, he was on Medicaid. It covered his formula, but only a very specific kind. He ended up burnt out on it and it became more and more difficult to get him to drink it. The medical food was another problem. We had a monthly grant from the state. Only when he was on Medicaid (ie: I wasn’t working) and it was only $200 per month. With the prices of the PKU foods, that just wasn’t enough for a growing boy, especially in his teen years. I’m positive that this has contributed, if not directly caused, him to stray off diet. He’s 18 now, and living with me, unable to keep a job, didn’t finish school, and has severe anxiety, chronic vomiting and stomach issues, depression, headaches and struggles with on/off diet. It’s just so difficult to keep enough PKU safe food in the house regularly. And not enough variety.
I feel very strongly that if insurance was required to pay for foods and formulas, this wouldn’t happen to kids, and my son might actually have a much better outlook and more hope. It’s hard enough being a PKU kid/adult in this society. Compile that with even fewer food choices – having to eat the same things over and over – and it’s destined to fail. We cannot fail our children. We must help them succeed. We must help them overcome this disease.
I am a mother who constantly fears the damage being done to my son’s brain, and whether or not he’s going to be able to take care of himself. He is going to be added to my partner’s insurance in the fall. It would be a godsend for this to pass. Please help these kids.