"Lorenzo's Oil" Inventor Dies

Thirty years ago, when Augusto Odone's son, Lorenzo, was diagnosed with adrenoleukodystrophy (ALD), little was known about the disease. The diagnosis came with the advice to try to make their child's last days as comfortable as possible.

It wasn't advice that Augusto Odone was prepared to accept.

Instead, Odone – an economist by trade – retired from his job with the World Bank and began to research. He taught himself enough science to start experimenting with treatments. Within three years of Lorenzo's diagnosis, Augusto had developed a mixture of cooking oils that successfully slowed the effects of the disease.

The young boy, formerly not expected to live past 10, made it to see 30, thanks to his father's creation. The Odones' inspiring story was turned into the 1992 movie “Lorenzo's Oil,” starring Nick Nolte, Susan Sarandon, and Peter Ustinov.

In memory of Augusto Odone, who died Oct. 24, 2013, and his son Lorenzo, who died May 30, 2008, we are sharing their story, along with other ways that families have approached coping with a child's devastating diagnosis. With diseases ranging from ALD to cancer to progeria and other severe illnesses, these children have the odds stacked against them. But their strength and determination, as well as that of their parents and siblings, bring hope. We wish for a miracle cure for each and every one of them.

Running blind toward the light

Laura King Edwards has participated in the annual Thunder Road Half-Marathon since 2009. But this year’s race is going to be different for the avid runner – she’s going to run it blindfolded. Edwards, of south Charlotte, will run the course without the advantage of sight to honor those who’ve fought or are fighting rare diseases. She also hopes to raise funds for gene therapy research at the University of North Carolina at Chapel Hill, as well as increase awareness of different rare diseases. But her efforts are fueled by something more personal than all that. Edwards’ 15-year-old sister, Taylor, was diagnosed in 2006 with Batten disease – a rare, fatal childhood illness. 

Eli's Story: Untouchable

When I first found out I was pregnant, I was working as a postdoctoral fellow for the neuropsychological consultation service at Seattle Children’s Hospital. We worked closely with kids who were diagnosed with brain tumors to help evaluate changes in cognitive function related to tumor growth, chemotherapy, radiation, and related surgical procedures (biopsy, resection, shunt placement, and revisions, etc.).  We attended brain tumor rounds: the meeting where the most challenging cases were discussed by the brilliant medical team. My supervising neuropsychologist kindly told me that I could skip attending rounds while I was pregnant. I did not realize it at the time, but I was clearly flirting with fate when I told him that learning about fatally ill children did not bother me. 

'Life According to Sam': One Family's Fight Against Progeria

Getting ready for school in the morning is a little bit different for Sam Berns than for most other kids his age. There are extra considerations Sam and his family have to take every day due to Sam’s rare condition. For his mother, every minute, no matter how seemingly ordinary, is special. “He gets off the bus, it’s a moment. And I treasure it,” Leslie Gordon told ABC News. “Every moment in and of itself is special to me.” That’s because Sam has Progeria, a fatal genetic condition that causes accelerated aging in children. 

Artist uses talent to fight childhood cancer

A local artist is using his incredible talent to combat children's brain cancer in memory of the little girl he lost. Inside his workshop in La Canada, artist Randy Hage recreates memories. Tiny, meticulous, three-dimensional works of art in the form of old storefronts from New York City.