When baby KJ was diagnosed with severe carbamoyl phosphate synthetase 1 (CPS1) deficiency—a rare metabolic disorder that can trigger life-threatening ammonia buildup, his family faced a narrow path: strict dietary…
When you hear your newborn's been diagnosed with a rare disease, you may feel like you have to become a scientist in order to raise them. Parenting a child without…
Becoming a parent can be exciting and terrifying in nearly equal measures—along with the thrill, anticipation, and joy, there’s the fear of what could go wrong. Worrying about your child’s…
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