Margrett Priest Lewis is not your average American mom. If she were, the rest of us wouldn’t know her name.

She has moved from family tragedy and trauma to public safety advocacy in less than three years.

In June 2014, Lewis’ daughter, Nicolette, was badly burned in the family’s front yard in Sonoma, California. Along with her twin sister, Ally, and two friends from next door, the teen wanted to relight the family’s portable fireplace so the girls could roast more marshmallows. The family had often used containers of bio fuel to light and relight their fireplace. But that night, the fuel exploded from the bottle, blowing up in Nicolette Lewis’ face and setting her ablaze.

The teen suffered burns all over the front of her body — and had to be airlifted for emergency care. In the months and years that followed, she has endured multiple skin grafts and surgeries, and is still undergoing surgery to repair and restore her damaged skin.

But the story doesn’t end there. In some ways, the fire that June night was only the beginning for Margrett Lewis, Nicolette Lewis, and their entire family. Tragedy has taught Margrett Lewis advocacy — and this mother’s mission has taken her to Washington, D.C., where she’s pushed for legislation to help prevent future tragedies. Any family who uses a ventless fireplace could suffer what the Lewis family did — and the likelihood is increasing as sales of these vent-free products climb.

Each year, 3,900 people are burned by liquid fuels of all kinds. Some 450 people die from their injuries.

So we have to go back to that vapor explosion in Sonoma and the way it changed one American family — to understand why this mom will not rest. As one of her dearest childhood friends, Connie Coyne Bohrer, put it when she learned about the horrific fire and its aftermath: “What in the world is going on with you and your family, Margrett?”

Here’s what happened.

‘We locked eyes — we were both screaming.’ Margrett Lewis and her husband, Jeff, had recently redone the landscaping in the front of their residential home. They enjoyed hanging out on their new front patio and mingling with neighbors.

It was a beautiful Sunday evening.

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“It was June, and our girls had just finished their sophomore year of high school,” Lewis told LifeZette. “They were busy making summer plans. The two of them — twins but very individual people — were also looking forward to their junior year of high school and all that it would bring. The prom. The SATs. Their classes. All of it.”

Two friends of the girls came over that night — girls who lived next door and were lifelong friends. All four girls wanted to light a fire on the Lewis’ front porch so they could all roast marshmallows. They’d gone to the store and bought ingredients for s’mores.

“We had a circular fire pit,” said Lewis. “It’s a portable ventless fireplace. We live in a ‘spare the air’ region in California, and on certain days it’s illegal to burn wood, manufactured fire logs, pellets, or other solid fuels in a fireplace or outdoor fire pit. I had done my research. It’s why we’d bought and installed this type of ventless bio-ethanol fireplace. We wanted to gather safely with our neighbors.”

The bio fuel for this type of fire pit is not cheap. “I had been purchasing it for a while,” said Lewis. “The price of the liquid bio fuel jumped $6 per gallon that spring — to $25 a gallon. When I balked at the price increase, the specialty store representative told me it was ‘safer.’ So I bought a case.”

Her girls were then 16 1/2. They’d each been driving to their respective high schools for months. “They were on the front patio with their friends. They’d asked for permission to light the fireplace. And I’d thought: ‘What a sweet way to celebrate the start of their summer.'”

She made them wait for her to find a long-handled lighter from the house for safety’s sake, Lewis said.

After that, Lewis went back into the living room to watch TV while her husband went upstairs. He had an early start the next morning at his job as a civil engineer; it was already 9 p.m. on Sunday night.

The family did not know one chapter of their life was about to end and another about to begin.

“Unfortunately,” said Lewis — pausing here — “the fire went out. And the girls had to refuel it. They thought the fire was out, but you can’t see underneath the top plate. And when they went to refuel — which we’d all done many times before with these bottles of bio fuel that I’d bought — all of a sudden they experienced flame jetting. And the bottle of fluid burst into flames and sprayed all over Nicolette’s body. Suddenly she was engulfed in flames.”

Lewis and her husband, from inside the house, heard the girls’ “blood-curdling screams” and raced outside.

“I saw my daughter on fire,” said Lewis. “I reached out and grabbed Nicolette — this is what a mom does. She’s between a standing and a falling position. I couldn’t tell if she had fallen and had just gotten back up, or what, but out of sheer instinct I just reached out and grabbed Nicolette and pulled her to my chest, to smother the flames. We locked eyes, she and I. We were both screaming. I had to fight the flames to get them out. She had been sprayed with burning fuel and now her skin had turned into fuel.”

Her daughter then broke free, and together they ripped off the girl’s burning clothes. Jeff Lewis, meanwhile, took a towel and tried to smother the flames that were still consuming his daughter’s bare feet.

“They were just burning,” said Lewis, “because they’d been covered in fuel. Bio fuel is ethanol. It’s hard to extinguish. We knew Nicolette was hurt badly.”

The family had used this fuel on many other occasions, “never knowing it was a bomb of napalm. Simply tipping a bottle to pour the liquid fuel can ignite vapors into a flame thrower.”

The bottle of bio fuel did not have a safety guard — called a flame arrester — on its opening. This safety guard, or filter, fits into the nose of the bottle. Why wasn’t it there? “Because a flame-prevention device is not required for these fuel containers,” said Lewis. “And as a result, many manufacturers do not include them on their bottles or containers of liquid fuel.”

“Think about this,” Lewis emphasized, nearly three years after the horrible night. “When you pour this type of fuel, you’re refueling your ventless fireplace. It’s a reasonable, foreseeable action to take with a ventless fireplace. It was not misuse of any kind that night or any other times by our family. The fire that resulted and burned my daughter is a known problem with consumer fuel containers, but I only learned this later. The way to prevent this type of fire and burn injury exists and costs only a few cents per product — I know this from manufacturers and research experts now. And it’s called a flame arrester.”

With many types of fuel containers — glass, metal, plastic — a flame will ignite from a heat source, whether it’s a spark, direct heat, or static electricity. “It’s the same law of physics for any ignition source that has open access to volatile fuel vapors or vapor air mixtures. It will ignite and flash back to the concentrated source. The reaction increases air pressure and explodes fuel.”

“It’s not operator error,” said Lewis. “Technical experts, researchers, Ph.Ds — they have all explained the simple fire dynamics. A flame arrester completely prevents such an event from occurring. There’s no documented case that has ever been found when a functioning flame arrester is present.”

In the aftermath of the blaze. Recalling the day her daughter was burned is still agony for her, said Lewis today. “But if it helps other families know how to prevent this tragedy from happening to them or anyone else, I will do it.” Lewis has since collected hundreds of examples of other preventable, predictable injuries that have occurred all over the country — which breaks her heart.

She said, “To see Nicolette so badly burned was just God-awful. I remember how she said, ‘Call 911.’ Her voice didn’t sound right.

The woman next door — the mom of the two friends who were there that night — came running over at this point.

“She was a registered nurse, thankfully, and a school director with tons of training and experience,” said Lewis of her neighbor and friend. “Right away she took over Nicolette’s care.”

The Sonoma Valley Fire Department arrived quickly, she said. “They assessed my daughter and immediately called for a helicopter. I remember the EMTs looking at me repeatedly while assessing Nicolette. When they asked about her pain level on a scale of 1 to 10, she kept saying, ‘It’s a 6.'”

Knowing how brutal burn injuries are, any person in his or her right mind would have said, “Why isn’t she saying ’10’?”

Lewis said she “returned their glances of disbelief, and said, ‘My daughter is stoic.’ They responded, ‘We know, but we have to give her another shot of pain medicine because her vitals are indicating she needs it.’ It was obvious to all present that Nicolette was in extreme pain, but she still insisted she could get up and walk to the gurney — which she did.”

The EMTs loaded the teen into an ambulance for transfer to a helicopter. At the University of California Davis trauma center, Nicolette Lewis was stabilized, and then transferred to Shriners Hospital for Children in Sacramento for the treatment of her wounds. Margrett Lewis said her own burn injuries “were quite mild” (sustained when she grabbed her daughter to put out the flames) — and she didn’t worry about them too much. She was focused on her daughter.

A burn unit ICU is hard to describe. I have no vocabulary for the sights, sounds, or smells, but I most vividly remember the screams,” said Lewis, more than two years since she first entered a burn unit with her daughter. “Children of all ages were screaming as they begged for mercy. They each had to have their dressings changed, which means their wounds had to be opened, scrubbed and re-wrapped for infection control. In time, I could tell which children were being worked on by their screams.”

Lewis said of her own daughter’s situation, “We stood by her and held her hand. We all did.”

She described the long road that followed for Nicolette: fluid stabilization, organ resuscitation, surgery — excising and grafting her skin — fevers, infections, worries about blood flow, physical therapy, and occupational therapy. The teen had to learn how to walk again and had to constantly stretch her skin for range of motion. Donor sites where doctors had to remove skin “were surprisingly the most painful,” said Lewis. “Her donor sites took months to close.”

“She’s alive — we are lucky,” said Lewis of her daughter. “I am grateful.”

As this mother put it, “I held my breath for eight weeks. And it didn’t end when she was released from the hospital. Severe burn injuries are cruel. There is just no other way to describe it.”

The “cruelty” is what’s required to save one’s life, explained Lewis. “Literally, you have to survive this just to stay alive. I held her hand through many dressing changes in the acute phase — that’s debriding her skin and wound care before they re-wrapped her head to foot. Sometimes my knees bent as I struggled to keep from passing out or vomiting. Not easy. Not simple.”

“Even with a team of four people, it still took over two hours, twice a day. This was my initiation into burn survival — just like with countless other family members. This began our initiation into a lifelong marathon that we continue to run,” she added. “Our family’s experience is similar to what’s occurring in other homes, labs, and schools all over the nation. I’ve seen and lived with the spectrum of burn injuries — from superficial burns, to partial thickness burns, full thickness, grafting, and beyond — to amputations and even death.”

“She’s alive — we are lucky,” said Lewis of her daughter. “I am grateful.”

Even now, in mid 2017, Nicolette Lewis is still undergoing the two dozen or so reconstructive surgeries she will need to heal her skin and regain a functional range of motion. Mother and daughter have often traveled to Baltimore, Maryland, for Nicolette’s reconstructive surgeries, and have spent time in Sacramento for laser surgeries. Nicolette Lewis recently underwent a new round of surgery at Stanford University in Palo Alto, California. And Margrett Lewis, while making all of the arrangements and nursing her daughter through each stage of recuperation and recovery, does not want a single additional person to experience what her family has endured, in terms of surgery, pain, healing, therapy, recuperation, travel, expense, and upset — an incredible amount of upheaval in their lives.

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“I purchased a ‘safer’ product at $25 a gallon because it was designed for this purpose,” said Lewis of the liquid bio fuel. “There was no warning of its potential to become a bomb just by tipping the bottle. The manufacturer didn’t spend less than a nickel per unit on a safety guard for this product. Why? Because it didn’t have to.”

Lewis has asked the manufacturers and their representatives about this. “They have said, ‘Because there is no regulation for commonly used flammable fuels. There is no standard. We would follow it if there were.'”

Lewis has joined committees to learn more about the issues. She’s researched and read over 10 years’ worth of data on this specific topic. “I’m a mom,” she said. “You put us moms in life-or-death situations, we learn fast. We are not afraid to work hard, to learn complex processes, and to protect our families.”

She remains focused on the fate of other burn survivors and on stopping any new injuries as best she can. “For me, and for all the moms, dads, siblings, guardians, partners, spouses, and loved ones who are affected — we are asking for help. The well-known solution to all of this is the flame arrester.” She and the others have created a website, www.NotYourTurntoBurn.com, “because we are working together on this public safety issue. We are not statistics. We are human beings and want protection for people to be safe.”

Flame arresters “should be on all portable fuel containers. They are low-cost, low-tech, effective — and work every single time.”

Said Lewis, “We have to stop or save the next person from burning alive. These defective products exist in homes, families, and schools. How are we going to break this cycle? It’s a fair question.”

Lewis spends hours each week consoling, advising, and educating others — and advocating for them. She is a member of the American Burn Association and a member of its national leadership conference; some 60 members meet with their respective senators and congresspeople to express the need for more research on healing burn wounds. She also sits on a flame arrester committee and a recently formed ventless appliance committee. “These are the technical science committees that set voluntary standards,” she explained. “I am also steadfastly determined to make science classes in this country safe. We need more public awareness about this. Experiments that use bio fuels in science classrooms are safe only when flame arresters are present.”

In February 2017, Lewis spent time in Washington, D.C., to help get bipartisan co-sponsors of legislation to ensure that manufacturers include flame arresters on every type of liquid fuel bottle or canister. “Our government is supposed to protect us. That is why we pay taxes, have regulations, and elect our representatives.” A new bill will require a standard to be written, finally, she said. “Those who met with me [in Washington] clearly know I am advocating for their constituents.”

The Portable Fuel Container Safety Act of 2017 was signed and introduced in early February by Rep. Mike Thompson (D-Calif.) and Rep. David Joyce (R-Ohio).

Said Lewis, “Because we are the grieved and bereaved, we call this bill ‘The Burn Survivors’ Act.'” Read the latest on the bill here.

Next chapter. Nicolette Lewis, meanwhile, graduated from high school, as did her sister, Ally. In early 2017 Nicolette interned at Washington Hospital Center in Washington, D.C.; it’s a program for students who want to pursue a medical career.

“It took a full year for her to attend the program — her involvement had to be postponed because of her injury — but she went to Johns Hopkins and spent 10 days touring medical schools, cadaver labs, and the University of Maryland’s shock and trauma center,” said Lewis of her daughter. “She has always wanted to be a doctor. I can remember years ago that her favorite dress-up outfit was a physician’s lab coat with her name on it, which her grandmother bought her.”

Probably the most influential person for her daughter now is her reconstructive surgeon, Leigh Ann Price, M.D. “Dr. Price with her skills as an attending physician at the Hopkins Burn Unit had recently become director of the National Burn Reconstruction Center at MedStar Good Samaritan Hospital in Baltimore,” said Lewis. “Nicolette has learned true grit from Dr. Price while going through her multiple tissue-expanding surgeries and all the challenges involved. Medical professionals seem to appreciate my daughter’s thirst for medical and clinical knowledge.”

This proud mom added, “She is a focused young woman who is not letting her injuries define her, all while undergoing continued surgery. She simply wants to move forward with her life.”

And yes — Nicolette Lewis has applied to college and is awaiting word from several universities. Her sister, Ally, is attending Denver University.

Added Jeff Lewis, who has kept the family’s home running through so much, “From this life-altering injury, both my daughters continue to inspire me as a dad. I can’t undo what happened — but I am working hard to support my family through this difficult recovery process.”

As Nicolette Lewis herself told LifeZette, “This very hard detour has just forced me to become more focused.”

Equal opportunity hazard. The fire hazard presented by liquid fuel containers that do not have flame arresters is “an equal opportunity hazard,” said Margrett Lewis.

This is true “whether it’s gasoline, as for refilling a lawnmower, weed eater, or chainsaw; kerosene, for heaters and lamps; ethanol or denatured alcohol, for stoves, fireplace fuel or lanterns; methanol or methyl alcohol, such as the kind used in classrooms and demonstrations; or even hybrid and emerging fuels. And if bio fuels are our future, I’m advocating that we must require this safety feature of a flame arrester.”

Many manufacturers already have added them.

Some have chosen not to protect the public from this risk.