My name is Teresa Boyette I live in Kinston NC I was born overseas where nb knew bout pku tills American soldier discovered it.i struggle everyday with high levels n can never get to normal level like docs want even with kuvan.im on disability n have a husband with cancer twin boys who r on meds for mental health issues.i can only buy three boxes of pasta a month we I some money left after paying bill both of us on disb.with any help from the bill would help out me n people like me.we r a state that is struggling bc there r no fund r vouches to help people like me to get help n provide a accurate diet n levels so we can function like everyone else.im one of the oldest that’s has pku n the oldest in my county to have pku.its a struggle go to festival grocery stores n restaurant bc there’s nothing I can have.this bill would b a life saver to me n the people like me that r younger than me can thrive with this lp foods but rt we can’t afford buy from pku Presptives r cambrooke bc prices r expensive.if we get this bill pass we can buy more lp food to help us function n do r normal activities.we r tired bc we can’t get the proper bills to pass bc people that don’t understand what pku is r how it effects us as a whole person.yhe docs don’t know how to treat us n they can give us thewrong food not knowing it can hurt us r even some cases die bc r brain is full of bad protein.we would appreciate if u could take in incoideration to pass this bill it can save a lot of lives with pku n their families who r suffering thank u. In my state they only pay for formula no kuvan no low protein food
- Sarah
- Ronan, Age 2