holywood model: Do You Want to Know How You’re Going to Die?

When Heather, a small business owner in Virginia, walked down the aisle at her wedding in October 2015, her mother, Anna, sat in the front row smiling. Heather knew her mom as a

Life for Heather and Anna changed quickly—too quickly. Just over a year after her wedding, Heather found out that Anna, 61, had been diagnosed with Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig's disease, a neurological disorder for which there is no cure. Two and half years later, Heather witnessed her mother starve and dehydrate herself to death; Anna could not bear to live with ALS any longer.

Anna's ALS diagnosis left Heather with more questions than answers. Her uncle—Anna's brother—had also died from ALS, in August 2014. With two close familial ties to the disease, Heather worried she, too, may carry the gene. Only a genetic test would reveal the truth. A positive test result would mean that Heather would likely later receive an ALS diagnosis and she could put her unborn children at risk of what she refers to as the "most sadistic disease." But what would such knowledge give her? There would be nothing she or anyone could do to prevent symptoms from appearing, and she had no way of knowing at what age the symptoms would start. What can a young woman do with the knowledge that she could die in the same cruel manner that her mother did? Is there value in knowing that you have the gene for a disease for which there are no cures or preventative measures you can take to delay its onset? And is there anything that a person can do to change their children's fate?" title="When Heather, a small business owner in Virginia, walked down the aisle at her wedding in October 2015, her mother, Anna, sat in the front row smiling. Heather knew her mom as a "hippy" who wore comfortable clothes like jeans and clogs, but for her daughter's wedding, Anna had made an exception, wearing a sequin navy dress with low heels. "It's what you dream of, and I got the chance to have it," says Heather (not her real name), now 36. "If we had gotten married any later than that, things would have been vastly different."

Life for Heather and Anna changed quickly—too quickly. Just over a year after her wedding, Heather found out that Anna, 61, had been diagnosed with Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig's disease, a neurological disorder for which there is no cure. Two and half years later, Heather witnessed her mother starve and dehydrate herself to death; Anna could not bear to live with ALS any longer.

Anna's ALS diagnosis left Heather with more questions than answers. Her uncle—Anna's brother—had also died from ALS, in August 2014. With two close familial ties to the disease, Heather worried she, too, may carry the gene. Only a genetic test would reveal the truth. A positive test result would mean that Heather would likely later receive an ALS diagnosis and she could put her unborn children at risk of what she refers to as the "most sadistic disease." But what would such knowledge give her? There would be nothing she or anyone could do to prevent symptoms from appearing, and she had no way of knowing at what age the symptoms would start. What can a young woman do with the knowledge that she could die in the same cruel manner that her mother did? Is there value in knowing that you have the gene for a disease for which there are no cures or preventative measures you can take to delay its onset? And is there anything that a person can do to change their children's fate?" style="text-decoration: none; -ms-interpolation-mode: bicubic; height: auto; border: 0; width: 560px; max-width: 100%; display: block;" width="560">

Do You Want to Know How You're Going to Die?

When Heather, a small business owner in Virginia, walked down the aisle at her wedding in October 2015, her mother, Anna, sat in the front row smiling. Heather knew her mom as a "hippy" who wore comfortable clothes like jeans and clogs, but for her daughter's wedding, Anna had made an exception, wearing a sequin navy dress with low heels. "It's what you dream of, and I got the chance to have it," says Heather (not her real name), now 36. "If we had gotten married any later than that, things would have been vastly different."

Life for Heather and Anna changed quickly—too quickly. Just over a year after her wedding, Heather found out that Anna, 61, had been diagnosed with Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig's disease, a neurological disorder for which there is no cure. Two and half years later, Heather witnessed her mother starve and dehydrate herself to death; Anna could not bear to live with ALS any longer.

Anna's ALS diagnosis left Heather with more questions than answers. Her uncle—Anna's brother—had also died from ALS, in August 2014. With two close familial ties to the disease, Heather worried she, too, may carry the gene. Only a genetic test would reveal the truth. A positive test result would mean that Heather would likely later receive an ALS diagnosis and she could put her unborn children at risk of what she refers to as the "most sadistic disease." But what would such knowledge give her? There would be nothing she or anyone could do to prevent symptoms from appearing, and she had no way of knowing at what age the symptoms would start. What can a young woman do with the knowledge that she could die in the same cruel manner that her mother did? Is there value in knowing that you have the gene for a disease for which there are no cures or preventative measures you can take to delay its onset? And is there anything that a person can do to change their children's fate?

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