Thankful for two healthy boys despite their newborn diagnosis of PKU (phenylketonuria). Most people don’t know that these two were born with a metabolic disease which means they cannot properly process protein. This was devastating news at first, but eventually we became good at managing diet and doing labs. The whole thing just felt so wrong though. Our entire life work is centered around farming: growing protein!! Milk, eggs, beef, pork! And then to have two sons who, according to the medical textbook, could never have such foods. Instead, they were to eat plenty of fruits, vegetables, and carbs. LOTS of carbs. French fries, synthetic foods and formulas, packed with sugars, flavors and empty carbs. It bothered me very much. You can’t build healthy bodies like that, and the medical field knows it. Studies have been done about bone density loss, but there is no cure they say. The only approach is to modify the diet.
I could just never quite get on board with the whole approach. I kept trying things, pushing limits, taking labs. We received wise advice one day to keep “leaning” against this, both in the natural and in the spiritual sense. Keep praying for healing, keep learning, keeping in mind that this reality today isn’t necessarily the final story.
Fast forward a few years, and now they are four and six years old. They were responders to a drug called Kuvan which “prods” their lazy enzyme to get working.
They are thriving, eating a 90% normal diet. Eggs, bacon, chicken, beef (in moderation)! Their levels bounce around some but their genetics doctors graciously allow me to color a bit outside the lines. We have an agreement.
I believe there is so much truth in “leaning”. We hold the tension of the reality of today with what our spirits long for and desire. How much of my boys current success is due to the drug? Some PKU kids dont respond at all to the drug. Have they been healed? I know for a fact that kuvan responds better to a protein “load” which we wouldn’t have experienced had we not been pushing protein. At any rate, we praise God for progress and continue to rejoice with every level that’s in range!
Here they are after their annual genetics appointment, celebrating with hospital cafeteria lunch.