DANCING AT THE VATICAN

BRENDA LARA
From Buenos Aires. At 15 years of age, Brendae suffers from Juvenile Huntington’s (JHD). She lost her Father to HD on her last birthday after her Mother had left, unable to cope. She’s been cared for by her aunt Norma Lara ever since.
The subject of this week's arts and culture column is a documentary that addresses an especially cruel illness: Huntington's Disease.

Here's how the piece begins:

“Dancing at the Vatican,” a 38-minute documentary directed by Brian Moore and produced by Amanda Spencer, showcases the plight of those suffering from Huntington’s disease (HD), a progressive neurological disorder. A parent with HD has a 50/50 chance of passing it on to his or her offspring.

The film is narrated by Emmy award-winning former NBC-TV foreign correspondent Charles Sabine, an asymptomatic HD carrier whose two beautiful young daughters accompany him to Rome.

HD causes progressive degeneration of nerve cells in the brain. Its symptoms include uncontrolled movements (the accompanying jerking and twitching is known as chorea), emotional problems, and loss of cognition. The disorder is genetic and it is fatal.

HD can strike anyone and anywhere: Folk singer Woody Guthrie purportedly died of it. But in an even crueler twist of fate, it concentrates in certain places around the globe, and they are mostly poor.

Barranquitas, Venezuela, in the Lake Maracaibo region, is one such place. Chile and Peru also have dense clusters of HD. Dilia Oviedo Guillén, from a village in Colombia, watched her husband and five children die of the disease. She now devotes her life, 24 hours a day, to nursing four more adult children who suffer from HD.

READ THE WHOLE PIECE HERE.