Sitting next to her husband in their Palm City, Florida, living room, Oralea Marquardt describes the last few moments of her 8-year-old son William’s life. Displayed prominently behind the Marquardts are photographs of William, who died in February from GM1 — a genetic disorder that causes a progressive loss of cognitive and motor functions.
“He simply exhaled, and he had all his family in and around him at home,” Marquardt, 38, tells the camera, her voice solemn but steady. “And I think every scenario I played in my head was much worse than that moment for us.”
The Marquardts share their story, from diagnosis through bereavement, in more than a dozen segments featured on the Courageous Parents Network. The brainchild of longtime television producer Blyth Lord, CPN is a new, video-centric resource site for parents whose children have received a terminal diagnosis of any kind.
Since it went live in April, more than 180 original, television-quality videos have been posted on CPN. In various segments, most of them between 90 seconds and seven minutes long, parents speak candidly about how caring for a critically ill child impacted their marriage; they talk about choosing comfort care over life-extending treatments and, poignantly, about the fear of being left with an empty crib.
There are also interviews with therapists, physicians and hospital chaplains. The experts provide primers on topics such as palliative care and anticipatory grief, and even the pros and cons of finding support on social media. (Pro: It’s easy to connect with those facing similar struggles. Con: Some feel burdened by the pressure to post constant updates.)
For Lord, 46, the project is deeply personal. In 1999, her 6-month-old daughter, Cameron, was diagnosed with Tay-Sachs, a degenerative disease that in its classic infantile form claims most victims by age 4. That devastating news came just three weeks after Hayden, the one-year-old son of her husband’s identical twin brother, was found to have the same terminal illness. Before the family had a chance to process one diagnosis, “we found out that two beautiful children in one family were going to die sometime in the next one to three years,” said Lord.
Hayden died in December 2000; Cameron died five months later.
Genetic mutations that cause Tay-Sachs — an autosomal recessive disorder in which two carrier parents have a 1 in 4 chance of having an affected child — are disproportionately prevalent among Ashkenazi Jews. As many as 1 in 25 people in this population carry a Tay-Sachs mutation; in the general population, the risk is thought to be between 1 in 250 and 1 in 300, according to the Jewish Genetic Disease Consortium. Thanks to widespread genetic screening among Ashkenazi Jews, the number of children born with Tay-Sachs has plummeted in recent decades; today, however, the disease long associated with Jewish genetics is more commonly found among non-Jews, who are less likely to have been screened for the mutation.
Hayden’s and Cameron’s parents are not Jewish, though Lord suspects her own mutation was passed down through a grandmother with Jewish ancestry.
The Lord families founded the Cameron and Hayden Lord Foundation in 2001 to build awareness of pediatric palliative care, in which symptom management and a family’s care goals help guide a child’s treatment. The foundation also funds medical research and bereavement services.
But Blyth Lord was determined to take her activism a step further. So last year, Lord — who had also partnered with the National Tay-Sachs and Allied Disease Association to make an educational film about parenting a terminally ill child — left her job at Boston’s WGBH to start the Courageous Parents Network.