PENFIELD, N.Y. — For parents, losing a child leaves a void that can never be filled. A Penfield couple who lost their daughter to anorexia six years ago has started a new effort to provide help and support to people with eating disorders. 

Finding purpose in loss can be toughest on parents. A backyard memory garden is where Jack and Linda Mazur reflect on theirs.

“We just feel her presence here,” Linda Mazur said of their daughter.

Emilee Mazur was a doctor of pharmacy. She was young and successful, bright and happy, according to her parents.

“She had a personality that lit up the room from the time she was very little,” said Linda. “She impressed everybody with her stories.”

Emilee’s story is one her parents are now sharing. It’s the story of a young life lost to an eating disorder.

“The statistic I tell people — and they're shocked — but every 52 minutes somebody's dying as a direct result of an eating disorder,” said Jack Mazur.

“It’s so hard to wrap your head around,” added Linda.

Emilee was diagnosed with anorexia at age 25. Six years ago, after years of treatments, hospitalizations and attempts to get well, Emilee died. She was just 35.

“There wasn't hardly any support at that time for adults with eating disorders, and for family and loved ones,” said Linda. “And eating disorders are so stigmatized. There’s so much shame for just having one.”

National surveys estimate that 20 million women and 10 million men in America will have an eating disorder at some point in their lives. That’s according to the National Eating Disorders Association. While the reason why isn’t clear, a growing consensus suggests it is a range of biological, psychological, and sociocultural factors.  

Emilee’s parents remain frustrated by the insurance industry, which they say failed to pay for adequate treatment for their daughter — sometimes sending her home from hospital stays if she gained even a couple of pounds.

“I was naive enough to think that when a child's sick you take them to the doctor, that no matter what age, and doctors would know what to do,” said Jack. “And I didn't realize how little training they got, if any, for eating disorders.”

The Mazurs wrote a book, telling their daughter’s story. Now, they’ve started a nonprofit called The Emilee Connection to support adults with eating disorders and their families. The Mazur’s son Matthew helps run it, so that other families might avoid what theirs has gone through.

“We wanted to start something for adults and their families,” said Jack. “And friends of adults that just needed some support outside of the medical community.“

“The whole reason that we're doing this is her last wish was to have her story shared,” said Linda. “So nobody else had to suffer the way she did, how can you not share it?”

As the sixth anniversary of Emilee’s death approaches, her parents have finally found purpose — in their loss.

“You just have to have faith that you'll never figure out why painful things happen,” said Linda. “But if good things can come of it. And you can help other people, why wouldn't you?