Only about 2,000 people around the world have this disorder.
Zara Hartshorn suffers from lipodystrophy, a syndrome that causes the supporting fatty tissue under the skin to crumble even while the skin continues to grow, often at an alarming rate. Two of her siblings and her mother also have the disease.
This morning, the "Today" show featured her story:
Our hearts go out to Zara Hartshorn and her family.