Phenylketonuria from a photographer’s perspective

I remember when I was young and I had to be stung on the finger for a blood sample. It was not particularly fun! It was probably the moment I dreaded the most when I had to go to the hospital. Indeed, as I have always been very sociable, it was always with pleasure that I met doctors, nurses and dietitians and I chatted at length about my activities as a little child.

Today, I stumbled upon photographs of Taylor Churchwell Manning, a talented photographer with two phenylketonuric children. She captured the entire blood sampling process in a very artistic way. I liked the publication so much that I asked her if I could share it on my blog, which she was eager to accept!

PKU from a photographers perspective 📸 💉🧬

I’m always looking for reasons to use my camera other than in a professional manner, so here you go!

My husband and both kids were all born with this unique genetic feature. I knew absolutely nothing about it except that you “couldn’t have protein” to put it simply. Honestly, I never dreamed that when having children they would inherit this. It just so happens my husband has it and I carry the gene, so a little bit of him and a little bit of me and we have two amazing PKU’er’s!

Bloodwork can be a type of bonding for these three. To know that they’re not alone, and that they’re in this together everyday gives them all a sense of pride and peace.
To say that it’s hard is an understatement. Not necessarily the food (because I’ve gotten the hand of it now), but the explaining to others, the worry when they’re not with you, being “that” kid at the party who can’t have the pizza or ice cream so you use every excuse not to go, or seeing and being intimidated by the parents who achieve the 100 step process of recipes, or awkwardly informing ones “I’m sorry, thank you for the offer, but they can’t have that”.

But to say that it could be so much worse, yet it’s not, is such a blessing. I’ve learned I can do so much more than I ever thought I could (experimenting with meals, substituting) and that my kids are going to be some of the healthiest, YES HEALTHIEST, kids ever!