A letter to Jacob’s ASS1 genes

Dear Jacob’s ASS1 genes,

You were given one job. That job was to produce arginosuccinate synthetase. But somehow you forgot how to do it. Or perhaps you never knew? In my DNA and in Daddy’s DNA, you had a dominant partner covering for you. But now there is nowhere to hide. You have been found out.

Right now we don’t have a way to fix you. One day that may change, but until then, here is a partial list of things Jacob will not be able to do because you fail at your one job:

  • Sample the entries at his family’s annual chili cookoff
  • Travel to any country whose hospitals lack metabolic doctors
  • Have ice cream on his birthday
  • Enter a hot dog eating competition
  • Take someone out for fondue on a first date

But here’s a secret, Jacob’s ASS1 genes: we are all limited in some way, be it by biology, circumstance, or even choice. I will never play professional  basketball. (Who am I kidding… I will never play basketball at all.) I will never be the president of France. I will never go scuba diving because of problems with my ears. But it would be silly to focus on those things, wouldn’t it? The question is not whether we have limitations, the question is whether we let them define us.

I wish you knew how to make the enzyme that Jacob needs. I fear for my son in a world so full of foods that could do him serious harm. I pray every day for the strength and the vigilance to protect his health, and to teach him to do the same for himself when he is old enough. But I won’t allow your deficiency to define his life. Jacob’s story will be so much more than an error in his DNA.



2 thoughts on “A letter to Jacob’s ASS1 genes

  1. I congratulate you on your positive perspective and emotional strength! Remember that there are many ‘moms’ on Shorecrest’s Faculty and you can lean on us at any time!


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