Coverage would give our family peace of mind. My youngest daughter, Hailey, has PKU. Everyday, she is required to drink a very specific formula. This will be required every day, for the rest of her life. A can of powdered formula lasts us about 8 days on average. A pack of 6 cans can cost close to $200. On top of this, she requires specific foods that have been made without protein. Low protein bread is a great example. While normal bread may cost $1-2, low protein bread can cost $11 for one loaf. Imagine all the foods you buy for your children. Now imagine each item is 10x more expensive than it is today. This is our daily life. We struggle. My wife and I have secure, well-paying jobs and that still isn’t enough. I fear the day when Hailey goes to college and the high cost of low-protein foods and formulas will make it hard to maintain her diet. If that diet is not maintained, her personality and her mind will degrade. My daughter needs this – it’s the only thing between an independent life, and a life in 24×7 care. Please, I don’t want to see my beautiful, smart, sassy daughter lose herself simply because we cannot provide her the nutrition she needs to live.
- Liam, Age 5