I’ve had the chance to become a father 16 months ago. So I understand now that even before birth, this little being takes all our attention and that we only want one thing : to keep them perfectly healthy and safe at all times.
Unlike me, my daughter does not have phenylketonuria, but I am now in a better position to understand how it feels to be told that your newborn baby has a genetic condition. Something very weird that we have never heard of and that we can barely pronounce!
Fortunately, there are resources to reassure us. In addition to the nursing staff and the wonderful meetings with other members of the PKU community, there are several tools that have been developed to inform new parents. This is the case, for example, of the TEMPLE tools suggested by Nutricia North America.
TEMPLE (Tools Enabling Metabolics Parents LEarning) tools are documents that have been created to easily answer any questions and concerns parents may have about their child’s metabolic disease. And yes, there is one for phenylketonuria!
I went through it myself and I could actually find all the questions that I usually get asked about phenylketonuria. 😛
- What is phenylketonuria, in plain English?
- How is it treated?
- Why does my child have this condition?
- What will happen to my child?
Our child is the center of our universe. An unknown disease can become a source of great concern (I speak as an overprotective dad). On the other hand, as a phenylketonuric, I can assure you that we are fortunate to live in an era when this condition is well known and well treated. We are surrounded by tons of resources to help us and have access to tools to stay informed. After all, the scariest thing is the unknown, right?
If you want to download the tool in PDF format, you can click HERE. You can also watch the video version below.
This article is presented in collaboration with Nutricia North America.
PCU blogue 