KNOXVILLE, Tenn. — Bryan and Blair Begbie said all they want for Rowan — their youngest daughter — is the chance to be a kid.

However, the Food and Drug Administration issued what is called a Complete Response Letter to pharmaceutical company Ultragenyx in July , which makes it hard for Rowan to get the treatment she needs to lead a normal life after being diagnosed with Sanfilippo Syndrome.

A friend helped the Begbies identify the signs of Sanfilippo, also known as childhood Alzheimer's, in Rowan.

What the Begbies thought were temporary delays in Rowan's development, such as speech, were actually signs of the rare genetic condition that often leaves children immobile by the time they're 10 years old, according to data from the Cure Sanfilippo Foundation.

The letter issued by the

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