Gingerbread Houses and Genetic Conditions

When I married The Chiropractor, there was a unique reason why my brother’s wife was especially excited for him to join the family.  (Aside from the chiro care he brought along.)  His healthy eating and hence my catering to his healthy eating (eh, more or less…) meant something special for my nephew Matthew.

Matthew has a rare genetic condition called Prader Willi Syndrome, or PWS. You can google it to read all about it–it’s actually pretty fascinating.  But the gist of it is that Matthew has constant hunger, more or less an insatiable appetite.  The “full” signal never comes on for him.  There are some other things that come in the package of having a partially deleted chromosome, but food-seeking is generally considered the most problematic and difficult to manage behavior, at least it’s the most often talked about.  Because he also doesn’t have a gag reflex, if he were to overeat to the point that he truly exceeded what his stomach could hold, it would/could perforate.  That’s a situation his parents and teachers work every day to prevent, and it means constantly monitoring and managing his food intake meticulously. He refers to it as his “tummy monster” and even though it sounds cute, it’s a little sobering to compare my sometimes difficult to manage food seeking behaviors (my own tummy monster) to a constant, never-satisfied appetite that is completely out of his control.

He also has amazing spiritual sensitivity and is one of the most thoughtful kids I know. He’ll blow you away with some of his questions and comments.  He’s done very well on some clinical research trials for PWS treatments and his parents have been proactive since his birth to help him with the right kinds of support. But ultimately food is always on his brain, even if it’s floating just below the surface of his current focus.

Because of that it can be very hard for my brother’s family to participate in many traditional social gatherings, especially if sweets are going to be out in the open.  That means getting the nieces and nephews together for typical holiday activities has to be carefully planned too.  A gingerbread house spread with a table full of bowls of candy and frosting are a recipe for disaster for Matthew, which is why he can’t typically participate in that kind of activity. But when The Chiropractor and I suggested doing “healthy” gingerbread houses, my sister-in-law knew this was an activity she could let Matthew attend.  (Long explanation, sorry.)

So when we did this two years ago, we stocked up on Wasa bread crackers and peanut butter and then scrounged for whatever remnants of vegetables we were willing to sacrifice to the cause.  (I initially tried hummus and other dips that go better with veggies, but it wasn’t thick enough to hold anything together.)  The leafy tips of celery ended up being brilliant additions. Carrots, cauliflower, cabbage, broccoli, and bell peppers made up the trimmings. I’ll let the pictures tell the rest.

Just in case you’re wondering, most of this did NOT get eaten.  Honestly, who wants to eat peanut butter on mushy carrots or broccoli?  But, the point is that Matthew was able to participate in the activity without any concern for indulging in something problematic, and we all got to make “gingerbread” houses, and develop some new creativity in the process.  🙂

If you want to try this strange activity, here’s what you could start with:

-Wasa multi-grain crackers (the structure)

-peanut or other nut butter (the glue)

-broccoli and cauliflower florets (think snow-covered landscaping)

-strips and round slices of carrots (roofing)

-celery in various lengths, including the leaves (palm trees)

-outer leaves of cabbage (Santa’s sleigh?)

-golden raisins (anywhere you’d otherwise put gum drops)

-some cute kids to put it all together

Matthew and Santa’s shack

Ben and his winter chalet

Claire’s engineering work

The Chiropractor’s masterpiece

We’re a little weird.  Don’t just us.