Wednesday, May 23, 2018

Chef Charlie

Last month the St. Louis metabolic clinic put together a PKU cooking class. Keith and I had been to a couple in previous years but this was the first time for Charlie. He was super excited. 

The class was partially sponsored by BioMarin, a pharmaceutical company specializing in "orphan" drugs for rare disorders. They make the drug Kuvan which is written on all of the aprons. While we ate we listened to a presentation by an adult with PKU. It was a treat to listen to a successful adult with PKU. Her story and the stories of other PKU adults leading "normal" lives while taking complete responsibility of their diet, inspires me to help Charlie become like that. So when he leaned over to me near the end of her presentation and whispered that he wants to be like her when he grows up, it made my heart smile.

 Chef Kevin taught the class. Not only is he a professional chef, but he is also the father of a son with PKU so he totally understands the lifestyle. Keith and I have gone to ones in the past with chefs that don't have a personal connection to PKU. They were still good, but it really is great when the chef has first hand knowledge of cooking for the restricted diet, having to modify plans on the fly depending on what else has been eaten that day, how to add flavor without adding more phe, etc.

 There were several different recipes to make so we split into groups with each group working on one recipe. Later we would eat and get the printed recipes for all of them. Charlie and I were in the team that made Cilantro Lime Riced Cauliflower.

 Keith was in the Bananas Foster group.

 Keith was pretty excited about that.

It was served over low-phe coconut ice cream. Mmmmm. You are all invited for dessert anytime. Keith would love an excuse to make fire.

On the way home Charlie was going through his goodie bag and reading everything in there that had words. (He will read almost anything these days.) He fell asleep while reading the fine print on the Kuvan information. :)

1 comment:

Karen said...

I love this post!! What an empowering experience for your family! XO