 In the fall of 2001 I was sitting in Liz and Dave Auerlio's Willow Glen kitchen. The couple had recently been honored by the Association of Funding Raising Professionals Silicon Valley Chapter for their founding of The Natalie Fund, a nonprofit named after their daughter who suffered from a rare brain disorder, Batten Disease.
As a parent of two young children I couldn't image how I would react if my children, born healthy, suddenly began suffering seizures that within a year would lead to a loss of mobility, speech and eventually sight. These were incredibly courageous people.
When I spoke to them they were candid about how life had thrown them a curve, as they looked me straight in the eye with a kindness and determination that would touch anyone's soul. When I asked them how this happened, without flinching they said they both carried the recessive gene that could trigger the disorder. But instead of beating themselves up over this lousy luck of the draw, Liz, a registered nurse, said, "Everyone carries recessive genes, so odds are usually rare. This was just a random event. You decide how to cope with it."
I'm not sure I would have been so level-headed. I have no idea how I would have coped with it. But I knew right then and there that since the Aurelios were fighters, there was no question what they would do. They would battle to save their daughter by looking for a way to stop the progression of the disease. Through their efforts and tireless research they would establish a foundation that would bring together doctors in search of a solution and families affected by the disease.
Perhaps it was their pragmatic nature that stood out, or their overwhelming belief in what they were doing that stayed with me for days after I walked out their front door.
I remember thinking how brutally honest Liz was when she said, "We have the science. We know the gene. You have the enzyme and know the mechanism. It's not that much of a leap. You have this risk and then you have certain death."
And Dave who said it would require mavericks in the medical industry since the brain is considered the last frontier in medicine.
Their situation reminded me of the movie Lorenzo's Oil, the story of a boy who was also born healthy but suffered from ALD, a rare and incurable degenerative brain disorder. Those parents fought when others gave up hope. And hope is all anyone can ask for.
This summer the Aurelio's nine years of fundraising efforts were finally bearing fruit. Clinical trials had begun and the family hoped that they daughter might be a candidate. But at age of 14, time had run out for Natalie, and on Aug. 28 she finally succumbed to the disease that trapped her physically.
But often the most difficult times are the most inspiring. And the people who appear to suffer the most are the ones who give the most. That is what I felt in the Aurelio family—strength, determination and unconditional love. It will become Natalie's legacy.
Moryt Milo is the editor of The Willow Glen Resident. She can be contacted at 400.200.1051 or mmilo@svcn.com.
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