My cousin's daughter was diagnosed as a baby. She was showing a lot of "signs" but there was no family history, so they didn't test. Finally the parents insisted and her levels were off the charts.
She is now a teenager and doing well, but her mom (my cousin) has basically made her care her full-time job. They have 4 other kids and her husband works out of town, so it is manageable once you get through the initial shock.
One of the biggest difficulties they faced was when the daughter would get sick and throw up, because it would mess up her blood sugar levels.
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