Cameron Boyce, who starred in Disney Channel's "Jessie" from 2011 to 2015, died in his sleep of SUDEP in July of 2019 at the age of 20.
Although he was diagnosed with epilepsy at 17, Libby Boyce said she had never heard of SUDEP prior to her son's death. But she feels the kinship with other mothers who have lost a child to SUDEP has given her life meaning.
"These past 10 months have been life-changing for me in a way that is beyond words. You can't compare it to anything because it is a trauma that is dissimilar to anything in the world. It has created a gaping hole that is raw and gut-wrenching," Libby Boyce wrote in a letter, published Friday by ABC's Good Morning America.
"Mother's Day is a cherished day for mothers across the nation. For others, it can be a day of reflection for those who have a challenging relationship with their children; or a day of regret for those who never had children; or it can be a day of sheer grief for those who have lost a child."
The letter, she wrote, was also her way of paying "tribute to all of the SUDEP mom warriors who live with this horrific burden."
Every year, about 1 in 1,000 people with epilepsy suddenly die. Doctors call these deaths SUDEP for short, and most occur during or after seizures, which can cause people to stop breathing and can trigger dangerous irregular heart rhythms.
An estimated 3.4 million Americans have epilepsy, according to the US Centers for Disease Control and Prevention, and those with uncontrolled seizures are at higher risk for unexpected death.
Libby Boyce said she refuses to believe her son died in vain.
"Epilepsy can be a lethal medical condition, yet very few people think of epilepsy as potentially life-threatening," she wrote. "It is something that has for far too long been swept under the carpet and I hope that sharing Cameron's story and the stories of other SUDEP mom warriors will be the catalyst for change."
Boyce's family also set up The Cameron Boyce foundation last year to raise funds in his memory.
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Cameron Boyce's mom draws attention to epilepsy on Mother's Day - CNN
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