Briana was born in 1989 and there were not many supports for her then, both in medical assistance or low protein supplement and food choices. When we moved from Texas back to Oklahoma when she was a few months old there was no coverage for her formula. After a year of lobbying for formula coverage to whomever would listen, it was covered through the then Crippled Children’s fund. For her first 18 years I ran the PKU Parent’s support group for the state of Oklahoma. As she has become an adult, I have witnessed continued difficulties with diet compliance within her age group and have realized even more clearly the need for strict maintenance, especially as she has entered child-bearing years. Assistance with medical food, formula, and health monitoring is even more critical as she contemplates having a child. My grandchild. It is time to make these medically necessary treatments available to every one with PKU for their sake, but also for the next generation. Currently the clinic pays for her supplement. No one assists with low protein food which would assist her tremendously with treatment compliance.
- Keira and Victoria, Ages 5 and 7