Tuesday, December 30, 2014

What is it about…and my favorite appetizers {#Galactosemia #Newbornscreening #dairfree #recipes}

Lately I have been thinking quite a bit about my little blog, where it's headed, and well also its purpose. Let me back up a little - yeeeeeesss people please just let me do it ;) ~  this blog, albeit under its old name Galactosemia in PDX, has been in existence since 2008.  I started blogging - upon dissolution of Galactosemia Support Northwest -  to share our journey;  talk about what it is like to raise children with a rare metabolic disorder and dietary restrictions in a positive way; plus life in general.   At the time Alena was 4 years old and Mia Rose not quite 2 years old; you can say we have learned a lot along the way.

One of the biggest reasons why I want to share our story and life is to give hope to all those with babies newly diagnosed with Classic Galactosemia.  It will be okay - really, believe me.  At first one is not able to see the forest through all the trees but once one comes to grips with the disorder it will be okay.  Sure there are challenges along the road, but heck everyone faces those in one way or another.  Show me the parent that does not worry about their child.  Now why did I start all of this,  I need to take you back to the time when Alena was fighting for her life.  When we had no clue, no idea, had never heard of such a disorder as Classic Galactosemia.  I remember sitting at the computer the NICU at Emmanuel Hospital provided to the parents (remember this is 11 years ago) searching the internet, hoping to find pictures, and stories of parents raising children with Classic Galactosemia.  All I wanted to know is what is their life like and yes - selfishly - what do kids with this disorder look like, what do they do, what will life be like.  Really, we had no idea and the information we found only presented worst case scenario.  So I hope that my little blog can provide hope, give strength to those newly diagnosed, those affected by Classic Galactosemia, be positive, and happy.
In our journey I soon came to understand that our little family would not be what it is today without Newborn Screening and shared our story.  You can say that I am an advocate for newborn screening because - this is not just sappy talk - without it Alena would not have survived.  MiaRose is our second born, so we already knew that there is a 1:4 chance for her to also be affected.  So, yes my other purpose to raise awareness for newborn screening, share our story, those of others saved by newborn screening in hopes that you all will learn about this life saving test and share it. And yes, advocate that all countries - such as the UK - to include testing for Classic Galactosemia in their newborn screening; please read Jake & Owen's story

Now, rightfully so you may ask what on earth does any of this have to do with food?  I am here to read about fooooood….. Good question!  Those affected by Classic Galactosemia lack an enzyme to metabolize galactose (a long milk sugar) into glucose and as such is a toxin for the body.  The only treatment for this disorder is through diet = food.  In infancy babies canNOT be breastfed but need soy, or other galactosefree formula; thereafter it is through regular diet.  The diet has changed a lot over the years, but no worries I will not go into this here but since diet = food this is where the food piece comes in.  Yes,  I love to cook and it was a steep learning curve but here we are 11 years later and to me it is second nature.  So the other purpose is to share our recipes.  All are 100% (ga)lactose free, most are dairy free (not all since aged cheeses such as Emmenthal, Gruyere etc. are "safe"),  some vegetarian and some vegan.  So yes,  the majority of the blog is about food and I hope to share with you all delicious recipes in hopes that you like them as much as we do.
Okay - now I talked a lot so here are some of our favorite appetizers that you can still pull off for New Years Eve.  Thank you so much for reading.
Smoked Sockeye Salmon Salad
Pineapple Salsa
Pinenut stuffed dates
Fleischkuechle (Swabian Mini Meatballs}
Lemon Sorbet in Prosecco


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