Organ donation that saved girl permeates lives of two Utah families during good times and bad.
This is an archived article that was published on sltrib.com in 2013, and information in the article may be outdated. It is provided only for personal research purposes and may not be reprinted.
Vernal • On an Indian summer evening, two families gather with balloons and stories for a reunion.
Children run and roam in the grass under the wide blue sky. But when two of them venture near an empty street, Lizzie Badger snaps to attention and calls out to Jonas and LuLu, insisting they not go near it on their own.
No cars are in sight.
Lizzie knows she is paranoid when it comes to cars, but she also has a good reason: the girl with long brown locks, grinning from the large picture on display, forever age 12.
Ashley Maynard died three years ago this month, darting in front of a car on her way to school in Vernal.
Her tragic death saved LuLu's life. The scar that today spans the 4-year-old's belly shows where she was transplanted with Ashley's liver.
The girls' families first met on a cold day in January 2010, over Ashley's white casket decorated with horses. While they remained in touch through texts, phone calls and Lizzie's blog about LuLu, they haven't seen each other in two years.
On this October weekend, they're catching up at Ashley's grave, its headstone etched with a unicorn.
They have more to share than the surgery: Both families have struggled to let their children live freely; both mothers are in limbo.
'I knew how quick things can happen' • About six months after her daughter Ashley died, Camie Lacey and her husband, Len, Ashley's stepfather, moved with their younger daughters, Samie and Abigail, to North Dakota, then to South Dakota.
Vernal was too full of memories. "She finally told me one day, 'I can't live here anymore,' " recalls Len. "She was giving up."
His job promotion with an oil company gave them an out. But Camie couldn't really escape.
She had driven her daughter to her bus stop on Jan. 5, 2010. The mother watched as Ashley was struck by a car and fell to the street, heard the school bus braking in the background. She was next to her on the emergency flight to Primary Children's Medical Center in Salt Lake City. After Ashley was pronounced dead, Camie held her in the hospital bed.
Soon after, Camie didn't want her daughters, then 5 and 7, to go to school. She'd keep them home or pick them up early. She needed them close by to ensure they were safe.
"I knew how quick things can happen. I just wanted them home."
When the family members moved to North Dakota, they lived across the street from their new school. Camie could watch the girls play at recess from her bed, where she spent much of her time.
At their next school in South Dakota, the girls walked across their remote road to catch the bus. Camie felt like she was reliving Ashley's last moments. Sometimes, she'd close her eyes but peek from behind a curtain to make sure they were OK. If something bad were to happen, she didn't want to see it again.
Camie's family moved back to Vernal last summer to be close to relatives. They share a house with Camie's father, in sight of where Ashley is buried.
Three years later, watching her now 10- and 8-year-old daughters ride their bikes is still hard. Seeing them from a window at her house in Vernal, Camie recently told herself, "Gotta calm down. Gotta calm down."
Although she is scared of losing another child, Camie doesn't want Samie and Abigail to live in fear. She talked them into riding a roller coaster at Lagoon last summer. She wants them to take risks.
Len agrees. "Life you don't control anything. You don't know what's going to happen 10 minutes from now. To hold back, it's pointless to me. They can't live if you're constantly pulling them away from things."
Both acknowledge they're probably too lax. Camie says she yelled at Ashley the morning she died, telling her she couldn't have Pepsi for breakfast.
"Now my girls drink Pepsi for breakfast," Camie says. "Tomorrow may be the last time I see them. … I struggle every single day just to parent."
'I have to let her live' • LuLu, a nickname for London, needed a liver transplant by the time she turned 1. She was born with the rare genetic disorder Alpha-1 antitrypsin deficiency, which prevented the organ from controlling infections, filtering toxins and processing food.
As her kidneys started to fail, LuLu jumped to the top of the transplant waiting list.
For months after her January 2010 liver transplant, the hospital was one of the few places she could venture. Because she takes immunosuppressant drugs, and will for the rest of her life, common colds and viruses have sent the family to the ER a handful of times. The drugs also mean she has an increased risk of developing melanoma and lymphatic cancers.
The summer after her surgery, the family members went on their first real "outing" to a park. Per doctor's orders, they waited a year after the transplant for LuLu to swim for the first time, at age 2.
LuLu now is in her second year of preschool. She takes dance lessons, has play dates and sleepovers.
Lizzie is usually ready with sanitizer to wipe down swings at the playground. She scrubs toys in Jonas' kindergarten class every week.
Parenting this now-healthy child is a balancing act, Lizzie says. She has recently stopped thinking of herself as a mother of a sick child. This month, LuLu will have gone 18 months without being hospitalized.
"I have to let her live." Lizzie says. "She had a second chance at life. We have to play. We have to go to parks."
Lizzie has awoken to LuLu cutting her mom's hair. The girl almost started a fire microwaving popcorn. She ringed her eyes with red lipstick.
"If I get frustrated with her, I think about Camie what she'd give to be able to be frustrated with her daughter," Lizzie says. "If she didn't have that fighting spirit, we might not have her."
'A whole life ahead' • For their October reunion, Lizzie's and Camie's families decide to first meet at a corn maze in Bluebell, a small eastern Utah town west of Vernal.
The Badgers arrive from Salt Lake City first. LuLu and Jonas head for a slide. The older brother tries to catch up with his sister "How do I go as fast as LuLu?" he asks. She screams on the way down.
As the Lacey clan arrives, Camie isn't sure how to introduce herself to the little girl. She's not her mom, but LuLu is family.
The organ donation was anonymous. Donation groups advise that families wait several months to meet if ever. But Lizzie and her husband, James, believed Ashley was LuLu's angel and attended her funeral after they read a newspaper article about the Vernal car accident and the family's decision to make Ashley a donor. The match was later officially confirmed.
"She's grown up," Len says.
"Like a beautiful weed," Lizzie adds.
The group heads inside the maze. LuLu stops first to play in a sandbox and sits on a play digger.
"Just like Ashley no shoes," Len says.
Camie says they do resemble each other. "Just the brightness. The rough and tough, don't mind getting dirty."
Camie may see some of Ashley in LuLu, but she doesn't think of her as a replacement, or expect her to do what Ashley would have done.
"I want her to think of Ashley as a positive thing," she says later. "Never a negative, never any guilt or any sorrow. I want her to be her superhero."
But in the maze she acknowledges she feels guilty and finds herself wondering: What if she'd been five minutes later dropping off Ashley?
"That's just the devil tempting you," Camie says, walking among the corn stalks, dried husks crunching underfoot.
Len adds: "It took me two years to get out of that road."
She found a path out through her faith.
"I don't want people to think I'm hard [but] I don't regret it," Camie says. "She's safer and happier where she's at. London gets to live on. So many people were touched by this."
Later, as the two families stand at Ashley's grave, they read Ashley and the Beautiful Rainbow, a book she enjoyed as a toddler. It's about a girl in the clouds who wants to make people living in the rain happy.
Camie still thinks of the Badgers as an answer to the prayers she sent on the day of Ashley's funeral.
"To have somebody in my face, saying, 'You saved my baby' that's what I needed. I needed … something concrete I could look at instead of her going in the ground."
Today, when Camie pictures the burial, she instead looks at photos of Lulu. "She's going to turn out wonderful," Camie says. "She has a whole life ahead of her the way Ashley did."
'I'm not going to make it easier for us' • Ashley would have been 15 in November. To mark her birthday, the Lacey family did things she used to like: They went to Taco Bell, drank soda and ate a Hershey's bar. They celebrated with a family dinner.
"I wonder what she would have been like," Camie says. "Would she have been one of these girls into makeup and shoes and clothes, or would she have been more into ... cowgirl-type stuff?"
At LuLu's fourth birthday party in early December, LuLu dressed as Tiana from the film "The Princess and the Frog," with a green dress and crown over the two buns in her hair. She lathered white frosting on her cake, shook sprinkles here and there and snuck bites of the candy toppings.
Shooting video, a grandmother asks her what happened when she was a baby.
"I almost died," LuLu says, taking a swipe of the cake. "I got a new liver from Ashley and then she died."
The family prays for Ashley and her family almost daily. They display pictures of her including one in their kitchen of Ashley wearing a Supergirl costume, her right hand raised to the sky. When Lizzie suggests Skyping a relative named Ashley, LuLu thinks she means the one in heaven.
Lizzie says she doesn't want LuLu to live for two, but wants her to be grateful. She does hope her daughter is like her donor, someone who loves animals and cares for others.
Lizzie often finds herself imagining how Camie must feel to lose a daughter, especially on both of the girls' birthdays, the day Ashley died and on Mother's and Father's days. She wrote in her blog that she'll find herself crying while vacuuming or folding laundry or watching LuLu laugh.
"I really count my blessings that London is alive. My heart really hurts often for Camie that her daughter isn't."
But she has never regretted knowing Camie. They want to honor Ashley, not an anonymous person.
LuLu knows Ashley was hit by a car and her parents gave LuLu her liver because her "body was too broken to keep living," Lizzie explains.
"She does need to know all that," Lizzie insists. "It's honoring Ashley's life. It's honoring her parents' decision to give her organs away. … I'm not going to make it easier for us to swallow. A child is dead. My child is alive."
Waiting for Sawyer • Lizzie and James had wanted three children. But with a 1-in-4 chance that another Badger baby would have been born with the liver disease, they ruled it out, along with an engineered pregnancy.
The earthquake in Haiti, which struck two days after LuLu's transplant, showed them another way. James, who owns a home-construction company, couldn't go then to help clear debris, but he went a year later, in January 2011. Lizzie joined him on his second trip months later, and they returned to the Foyer de Sion Haitian orphanage again this fall. James helped build bunkbeds , kitchens and a sewer system, along with other renovations. Lizzie, who is helping raise money to pay for their education, delivered backpacks and school supplies to each child.
They had hoped to adopt a child from Haiti but can't because of age and other restrictions. They are instead in the process of adopting from Ethiopia. It will take another two years. They've named their anticipated boy Sawyer.
Lizzie says LuLu may also need to adopt because the immunosuppressant drug she takes hasn't been well-studied in pregnant women and could cause complications.
Lizzie expects their adopted son to have special needs, likely emotional problems. They are OK with that. Sick children, as they know, can be a blessing.
'Always something missing' • Camie is waiting, too.
She wants to move back to South Dakota, where there aren't as many reminders of Ashley.
As their children swim in a hotel pool in Vernal, Camie tells Lizzie that she's in the process of reinventing herself. Things that used to matter don't. Asked if anything makes her happy, she says, "Not very much. I don't get the butterflies. There's always something missing."
She's trying to be a better mother. She tries to be more patient, she lets her daughters' messy rooms go, she talks and laughs more with them. Before, she was too busy. She thinks back to the night before Ashley died when she wanted to talk to her mom about a rabbit cage for her new bunnies. Camie put her off.
"I should have just listened. She would have went to bed happier."
Camie tells Lizzie she's not afraid to die.
"I've got ants in my pants. I'm ready for Jesus to come. I'm ready for it to be over."
She doesn't wish she were dead. She wants to watch her daughters grow up. She thinks about them getting married.
She means the wait to be with Ashley again.
"It's like being pregnant for the last three years. You're waiting, waiting, waiting to see them. You know you're going to have a chance again."
Ashley's gift: A liver for LuLu
Read The Salt Lake Tribune's 2010 story about Ashley's liver donation and LuLu's surgery here.