A Tyrosinemia Mom Turned Her Kids into Dietary Detectives

“Mom! What’s for dinner?”
It’s a question that strikes fear in the hearts of matriarchs everywhere. Meats, breads, vegetables—you know the basics. Now add in a picky eater or someone with a medically dictated diet, as is the case with tyrosinemia, and meals can become a real challenge.

For Stacey, and her family of five, she is proud to wear the mantel of “Mom,” but she turns to her kids to help her when it comes to being the family’s creative culinarian and dietary detective.

It all began when her son Toby was an infant. Doctors grew concerned when, at six months, he stopped putting on weight and his skin took on a yellow tint. With additional symptoms of fever, diarrhea, and a swollen tummy, Toby’s diagnosis was confirmed: Tyrosinemia.

Tyrosinemia is an extremely rare but treatable hereditary disorder, inherited from both parents.
This metabolic disorder makes it impossible for Toby’s body to break down an amino acid called tyrosine found in protein. When the body can’t break down tyrosine, high levels build up in the blood. This threatens the liver, kidneys, and central nervous system.

To manage Toby’s protein intake, Stacey needed to help him stick to his low-protein options, medications, and supplements. As protein is still an important building block in the diets of Toby’s sisters, but must be managed in his, Stacey has the challenge of making certain everyone is getting what they need from every meal.

Her solution to this dining dilemma? Make mealtime a “family affair.”
Genius! Source: www.giphy.com

Stacey created a time and place where everyone comes together to work towards the same purpose—creating a satisfying and well-balanced meal. Early in the week, the kids become dietary detectives by searching the internet for new “low-pro” recipes. They calculate the exchange rate for one protein to another, and work on swapping out protein-rich ingredients with more “Toby-friendly” ingredients that contain lower levels of tyrosine.

As the researchers, planners and consumers of the big family meal, there is a real feel of working together each evening, a camaraderie, that eliminates the need for Mom to be the only one who can answer that age-old question: What’s for dinner?


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