Urea Cycle Disorder

New“How would I know if I had your rare disorder? Can’t it be passed down in the family? You’re my mom’s sister, so…” She stops speaking, and there’s a long pause.  On the phone with me is my 18-year-old niece. The panic in her voice is unmistakable — the fear of receiving a life-altering genetic [...]

Dear Citrullinemia, Thank you. I know. I didn’t expect for me to say that either. “Thank you?” I don’t know. Something about that thing where time does something and things get easier and the hate kind of dissipates and this weird level of acceptance rolls in that you never, ever in a million years thought [...]

I saw the expression on her face out of the corner of my eye, and my body tightened in fear of confrontation. Her mouth tight with anger, I could see the venom in her eyes. I knew I didn’t have it in me to verbally spar with a stranger today, but I’ve seen actual physical [...]

You’ve just had a baby. You loved when it was just you and Jasmine, but now she has a sister, and that’s OK. You can make it work. The past few months have been rough because Jasmine has been pretty sick, and it’s been getting worse. She’s skinny and refuses to eat, but you’re doing [...]