‘An amazing life': Emily Locke was an inspiration to thousands around the globe

By Brian Soergel | Jan 16, 2019
Courtesy of: Steve Bartlett Emily Locke was familiar to QFC shoppers in Edmonds, where she was a courtesy clerk. She was an avid photographer.

If you shopped at QFC in Edmonds over the past few years, Emily Locke probably bagged your groceries.

You may have stared and felt sympathy while watching her work. Emily had Coffin Siris Syndrome, an extremely rare genetic disorder leading to developmental delays, and left her half-blind and with distinct facial features.

But sympathy would not have been what Emily wanted.

“You might have seen Emily and think, wow, how tragic,” said Cindy Locke, who along with her husband Lenny, adopted Emily at age 2. “What a sad, awful, hard life. People would actually feel sorry for her, the people who didn’t know her. But those who knew her realized, wow, she had an amazing life.”

A lot of people know that now.

On Dec. 13, a 65-year-old man driving a Volvo struck Emily at about 5:10 p.m. while she was in a crosswalk near Hilltop Elementary School east of Alderwood Manor in unincorporated Snohomish County. She was taken to Harborview Medical Center and died Dec. 18.

The driver of the Volvo, who stayed at the scene, was not charged, according to the Snohomish County Sheriff’s Office.

Condolences are pouring in for Emily from around the world, as she maintained a strong online presence – Google Coffin-Siris Syndrome, and the first result provides an explanation of the disease, along with an interview Emily gave to KING 5 News.

Cindy said she expects up to 1,000 people to attend Emily’s memorial service 1 p.m. Saturday, Jan. 19, at Eastside Church in Bothell.

“She was real passionate about anything art or creative,” Cindy said. “She loved poetry, she loved photography. She just loved to create. But her biggest passion was Coffin-Siris Syndrome. She had a Facebook page about it, and her biggest passion in life was getting to meet other families with CSS."

That page, and her personal one, are filled with memories, none more poignant than this one:

”She was a beacon of light in our fog. She showed us the way out.”

Inspiration

Understandably, the last month has been a struggle for Cindy.

In addition to her daughter’s tragic death, another adopted child, 6-year-old Reed, was recently hospitalized with pneumonia.

And Cindy suffers from Lupus, which is now affecting her heart.

Somehow, though, Emily’s positive outlook has been something to hang onto.

“We’re just kind of struggling through life at the moment,” said Cindy, who has three grown biological children of her own. “Life’s been pretty sucky since Emily got hit, but we’ll come out of this at some point.”

Emily certainly had reasons to be pessimistic in her disposition.

Despite her sunny outlook, she had a difficult life. As her family lives in unincorporated Snohomish County with a Lynnwood mailing address, she attended Lynnwood High School before transitioning to Edmonds School District’s VOICE (Vocational Opportunities in Community Experience) program. The latter helps prepare those with mild to moderate disabilities to transition to adult life.

Emily also took a photography class at Edmonds Community College.

It was the VOICE program that secured her a job with QFC as a courtesy clerk. After working at the Edmonds store for years, she later transferred to QFC in Canyon Park to be closer to home.

All the time, Emily had to deal with medical care, doctor visits, and respiratory infections. Some of her fingers lacked fingernails, a symptom of CSS. She could have difficulty speaking. She was diagnosed with schizophrenia in her 20s.

“I’m right here”

But as she aged, Emily became more comfortable with her life. People, not necessarily being mean, would ask if she were a boy or a girl.

“I’m a girl,” Emily would say, a smile on her face.

As she became more aware of her condition, Emily started sharing her life with others through social media. She gained Facebook friends around the globe. She became an educator. People became aware. People wrote to her in support.

Although numbers vary – some put the number of CSS cases as low as 80 worldwide, some at up to 200, with possibly many more undiagnosed – it seemed those with CSS were able to find Emily. But not only those with CSS connected with Emily. Those with other developmental disabilities did, too.

Parents and guardians contacted Emily as well.

“When kids are diagnosed with CSS or other disabilities, parents may feel lost, wondering if their child will have a meaningful life,” Cindy said. “Emily’s like, Hey, I’m right here. My life’s great. I have fun. I have passions, I have friends. I do cool stuff, I travel around, I work. I’m loved, I love. I’m normal, even though I have a disability.”

Families took notice.

The families needed it. If Emily did it, my child can do it, too, they told Cindy, both before Emily died and after.

Emily didn’t spend her whole life online. She was a Special Olympics gold medalist. And, in addition to photography excursions with family, every summer she’d volunteer for a Seattle Children’s Hospital summer camp for kids with chronic medical conditions.

“Emily helped people know that their children are valuable, too,” Cindy said. “Emily reached out to all of them and said, hey, it’s all good. Life’s good.”

Friends with celebrities

As Emily’s condition became well known, she became a celebrity of sorts in California.

One day, she was contacted by Richard Kraft of Kraft-Engel Management, one of the world’s leading agencies specializing in representing composers, songwriters, and music supervisors for film, TV, new media, and theater.

Kraft’s daughter, Daisy, has Coffin-Siris Syndrome.

In 2017, Kraft and his daughter attended a CSS conference in Seattle and met Emily. They became friends. Emily took numerous pictures of Daisy.

In the last year and a half, Cindy said Kraft flew Emily to Los Angeles several times to attend productions he was involved in. It was at one where Emily met famed Disney composer Alan Menken.

She was there when Kraft – an avid collector of Disney memorabilia – produced “Disney’s Beauty and the Beast Live at the Hollywood Bowl,” which was later released on video and starred Zooey Deschanel, Taye Diggs, Anthony Evans, Kelsey Grammer, Jane Krakowski, and Rebel Wilson.

Emily was there for rehearsals. She took photos of the stars and got to know John Stamos of “Full House” fame, who starred in Kraft’s live Hollywood Bowl production of “Willy Wonka” at the Hollywood Bowl in 2017.

Kraft later took Emily and Cindy to the exclusive Disney Club 33 lounge.

“Richard told me that you don’t even know how much Emily has done for me,” Cindy said, “how much support she has given me.”

While Emily was clinging to life at Harborview, Stamos called to check on her. Cindy said the actor is filming a video tribute of Emily to share at her memorial.

Kraft is flying up from L.A. for the service, which will feature professional singers and violinists.

Dec. 13

The day after she was struck in the crosswalk was to be a special day for Emily.

On Dec. 13, she posted the following on Facebook:

I cannot believe I will be 29 next Friday the 14th ... Time sure flies when you get older, don’t ya think? Thank you to my mom who has taught me the value of living a good life and being independent and the understanding of how to look on life even when things get difficult.

I'm blessed to live a long life and to continue to help be an advocate for the families who need support for their kiddos. Being a adult with CSS has been a blessing in many ways because I get the opportunity to know so much amazing people and to help others with questions and answers when they feel stressed when there child gets first diagnosed.

I may not have all the answers ... I want to say, yay, I will be 29 the 14th.

Watching over Emily

Cindy kept vigil at the hospital as Emily fought to live and doctors operated on her.

But doctors told the family the extreme damage to Emily's spinal cord and brain made it unlikely she would survive.

Cindy told her Facebook friends that she and her family agreed that the best course would be to keep her comfortable, but not put her through the list of surgeries she would need to begin putting her back together again if she ever woke up again.

Family members took turns watching over Emily. They played soft music. They told her how much she was loved. That her friends from around the world sent their love and prayers. Until she died, Emily seemed to be resting comfortably and was not suffering, Cindy said.

Cindy set aside a time for family and friends to say goodbye.

Emily will be buried at Floral Hills Cemetery in Lynnwood.

No wrongful death claim

Although the man who hit Emily has not been charged, Cindy said she’s frustrated that, due to Washington state law, she cannot collect monetary damages.

“Washington’s laws prevent Cindy from making a wrongful death claim because Emily was an adult and Cindy was not financially dependent on Emily,” said Jed Strong of Lowe Law Group in Tacoma, who is working for the Locke family.

The law, RCW 4.20.020, provides that for a wrongful death “action shall be for the benefit of the wife, husband, state registered domestic partner, child or children, including stepchildren, of the person whose death shall have been so caused.”

“Basically, it means that a life has no ‘value’ unless there are dependents,” Strong said. “It’s a little crass, but our legal system requires us to put a monetary value on an injury – what is fair to compensate someone for a loss to their health.

“But when it comes to a wrongful death, our Legislature has said that an adult’s life has no value to their love ones. So, when your adult daughter does nothing wrong and is killed while she is crossing the street, our Legislature has made it so the law does not recognize the worth of your daughter’s life. The Legislature essentially says there is no loss of companionship, love, affection, or support once you turn 18.

“It’s an absolutely terrible law. Not only does it disregard the fact that a family still loves their child or sibling once they reach the age of maturity, but it disparages the importance of life in general.”

Strong said he is limited to seeking recovery for the estate’s economic losses – medical bills and funeral expenses.

Donations

As word spread about Emily’s death locally, shoppers began leaving monetary donations to QFC clerks in her name to help with expenses. There were so many that Cindy set up a GoFundMe page at https://bit.ly/2Cuaz8R.

It’s become clear that Emily touched all those around her.

“She didn’t care about what status you had,” Cindy said. “She loved her CCS brothers and sisters; they were family to her. But if you were her friend, you were her friend.”

 

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