Not being able to see his son Louis smile was the moment dad James Lovell understood what his family faced.

Louis had been born healthy and was reaching his expected milestones until he was nine months old, when he began to regress.

First, he began to slump.

Then he wasn't able to reach and grab, or swallow food.

But it was his inability to smile that was "devastating".

Later came the so-called "phlegm episodes" that could last hours. Louis would be "retching, gagging and vomiting".

"He was a really happy, calm baby, and then he started to get irritable and scream," said wife Amy Harper.

After a number of medical misdiagnoses, Louis was finally diagnosed with Krabbe disease, a form of childhood dementia.

"When your child has a form of childhood dementia, you grieve from the moment

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