Living with MCADD — A Parent's Guide to the Metabolic Condition

What MCADD means for daily life, what to watch for, and how one family navigates it.

MCADD (Medium-Chain Acyl-CoA Dehydrogenase Deficiency) is a rare metabolic condition that affects how the body processes fat for energy. When Willem's child was diagnosed, he wrote the post he wished he'd found — practical, honest, and written by a parent, not a doctor.

MCADD means the body cannot properly break down medium-chain fatty acids for energy. During illness, fasting, or prolonged exercise, this can lead to a metabolic crisis. It's detected through newborn screening in most countries — but many parents have never heard of it until the phone call.

What daily life looks like: regular meals are non-negotiable — a child with MCADD cannot skip breakfast or go too long without food. During illness (fever, vomiting), the protocol shifts to emergency mode: frequent sugary drinks to maintain glucose, and if intake fails, hospital admission for IV glucose.

The hardest part isn't the medical management — it's explaining it to schools, babysitters, sports coaches, and family members who've never heard of it.

Willem's post is the most personal on his entire blog. It's written for the parent who just got the diagnosis and is searching at midnight for someone who understands.

From the heart and body collection.