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…