Ryan Jeffers sat at the dining room table, running his hands through his spiky hair and staring at two stacks of paper that have come to define his life.
In one stack were bills from his daughter Malyia's medical ordeal, which resulted in the amputation of portions of all four of her limbs. In the other, dozens of letters and checks from people across the country who have learned of the family's plight.
Jeffers dove into the piles one afternoon shortly after he and Malyia's mother, Leah Yang, unloaded their daughter, her stroller and other supplies from their small white SUV after the girl's daily therapy at Shriners hospital in Sacramento. He had less than an hour before he would need to pick up Malyia's brothers, Christian and Jaden, from school, so he got down to business.
"I want to thank you personally for your gift to our family," he scribbled to a donor from Florida. "Every little bit helps and is appreciated."
Between sips of a Red Bull energy soda, Jeffers enclosed a small black and white photo of the family, sealed the envelope, and picked up another thank-you card.
His back ached from a recent car accident, and his cellphone pinged with calls from creditors and medical offices. Eight bottles of Malyia's medicines crowded the otherwise spotless kitchen counter.
Malyia, who turns 3 this week, lay on a small mattress between her mother and her stuffed cat in the living room, watching a Disney movie about a handsome prince. Protective sleeves covered her scarred limbs. As she drifted off to an afternoon nap, her parents whispered their hopes that she would not scream out in her sleep that night.
Phantom pain. Curious stares. Sleepless nights and emotional breakdowns.
These are some of the challenges Malyia and her family face as they try to reclaim a normal life.
Last November, Malyia nearly died from a Streptococcus A infection, a bacteria that in most people causes nothing worse than flu-like symptoms and can be treated with antibiotics. In rare cases, the bacteria become "invasive," entering the bloodstream and attacking internal organs. This is the course it took in Malyia.
While Malyia was waiting for care in Sacramento's Methodist Hospital emergency room, her liver began to fail. By the time she reached the Lucile Packard Children's Hospital at Stanford University, where specialists stood by to treat her, the infection had invaded her blood, muscles and internal organs. To save her life, surgeons amputated parts of her hands and legs, which were irreversibly damaged after the infection choked off circulation.
Malyia spent more than three months at Stanford, then was admitted to UC Davis Medical Center in Sacramento for further care. Now she is getting intensive physical and occupational therapy at nearby Shriners hospital.
As joyful as Malyia's return home has been, it has presented extraordinary logistical and emotional challenges for her parents.
"I have hit my breaking point a few times, especially when she is in pain," said Yang, offering Malyia a sip of juice on a recent afternoon. "I have asked myself, 'How much more can I take?' "
The new reality
The first hours of Malyia's homecoming last month were pure joy, the couple said. They hung a princess poster in the living room, filled their daughter's new bedroom with donated toys and propped recent photos of Malyia and her parents in the home's entryway.
"I sat here on the couch, lifted her above my head and she just smiled," Jeffers recalled. "She was so happy."
Then the new reality set in.
"At the hospital, we were in a bubble," said Yang. "Here at home, it's only us, and we can see all of the things that she could do before by herself that she no longer can do."
Those include eating her cereal. Pulling up her pants. Sitting at the kitchen table in a regular chair. Climbing the monkey bars. Flipping the pages of a book. Yet Malyia seems mostly unaware of her limitations.
"Show how you climb the stairs!" Jeffers said as his daughter cuddled a toy dolphin. Malyia immediately crawled over and began pulling herself up each carpeted step as her dad trailed behind her. "What music do you like?" Yang asked her later. "Justin Bieber!" she squealed, twisting her arms in her version of a dance.
Soon, Jaden and Christian, ages 6 and 9, would be home and ready to wrestle and tease their baby sister. The younger boy was afraid at first of Malyia's scars and bandages, but he and his brother now treat Malyia much as they did before she became ill.
The family is trying to settle into a new routine centered around Malyia's needs. Therapy and doctor's appointments. School for the boys. Homework. Meals. Lights out. But every day, there are moments that remind them that life is anything but normal.
When Yang wheels Malyia down the sidewalk in her stroller, passers-by give long looks and gardeners pause from their work. On a recent trip to the zoo, children stared and pointed. Recently when Malyia tried to hug a little friend who had not seen her since her illness, the girl turned away in fear.
"That broke my heart," said Jeffers.
On warm afternoons at the park down the street from their house in Natomas, Malyia mostly sits quietly in the grass, wearing sunglasses and a hat, while her brothers climb and jump and swing. A trip down the slide in the lap of her mom or dad lifts her spirits.
Her worst hours come when night falls.
Lying in her bed in the darkness, surrounded by her stuffed animals, Malyia will erupt into agonizing sobs. Sometimes, people who have undergone amputations suffer from "phantom pain" in their missing limbs. This might be Malyia's problem, her doctors have said, though they cannot be sure.
Her parents and physicians are trying to adjust her medications to make her nights more comfortable. But sometimes getting Malyia to stop crying means holding or strolling her until the sun rises.
Strangers reach out
One of the most maddening aspects of the family's new reality, Jeffers said, are the bills: $4,169,821.48 and counting.
"Who could pay a bill like that?" Yang asked.
And they just keep coming. Some already are overdue.
Stanford alone has assessed nearly $4 million in charges, including $275,519 for drugs, $82,672 for the operating room and $20,476 for anesthesia.
There's also a $26,000 tab for air transport from Sacramento to Stanford, more than $2,100 for two visits Jeffers made to the emergency room for pain in his gut, and $126 in parking tickets from the UC Davis Medical Center.
"Coverage denied," some of the papers say. Others carry "second notice" stamps.
"I have been pretty fortunate in the past and I have never had to rely on anyone else," said Jeffers, 29. "I'm not used to this."
Malyia's family has insurance, but it will cover only a portion of the costs of her care. They found a lawyer through a friend and have filed a medical malpractice suit against Methodist Hospital, alleging improper care. The two sides are negotiating a settlement, and hospital spokeswoman Erin MacEneaney said Methodist is working "toward a solution to support" Malyia financially.
In the meantime, Jeffers and Yang are sending small payments to their creditors. Such arrangements are not uncommon with large bills, said Robert Dicks, a spokesman for Lucile Packard Children's Hospital. He said the hospital often works with patients who cannot pay the full cost of their care by offering no-interest payment plans or charity care. The hospital rarely receives full reimbursement for multimillion-dollar bills, he said.
Beyond medical debt, the family has had to invest in an arsenal of items to help Malyia at home: therapy equipment and specialized toys, as well as items such as a high chair, diapers and baby wipes, all of which Malyia had outgrown before she got sick.
She will get her first prosthetics for free through Shriners within the next month or two, and will need replacements possibly every year as she grows. As she gets older, she will need more surgeries. She may require a power wheelchair at a cost of around $30,000.
The family's lawyer, Moseley Collins, contends that the lifetime costs of her care could top $38 million.
When Malyia fell ill, Jeffers was working part time for a family storage business and selling health supplements online. Yang was attending cosmetology school.
Both essentially moved to Palo Alto during their daughter's health crisis, leaving their sons with their maternal grandparents in Natomas and giving up their Pocket rental home. Since leaving Stanford they have been renting a home close to Yang's parents, for $1,600 a month, and now spend most of their time tending to their daughter.
Yang cuts hair in the couple's home to help make ends meet. Their only other income is from donations from the many sympathetic strangers who have learned of their story through news reports.
More than $40,000, in increments ranging from $10 to $2,000, has come to the family. Many of the well-wishers have sent notes and poems, or gifts of children's books and videotapes.
"A little something and a bunch of prayers," one donor wrote. Another sent a pink stuffed bear twice Malyia's size. Hello Kitty toys have arrived from all over the nation.
The outpouring has become one of the few bright spots in the family's life.
"I have been through a lot of things," said Jeffers, who described a difficult and impoverished childhood. "You sometimes wonder if there are any good people left in the world. This has shown us that there are a ton of them."
A fierce spirit
Malyia Jeffers squeezed her eyes shut, and her tiny smile turned to a scowl.
"Owie!" she cried as therapist Laura van Houtryve adjusted the tight sleeves covering the heavy scars on Malyia's arms and legs. "No medicines!" she insisted.
The only thing resembling medicine that the therapists would give her was a therapeutic lotion they would gently apply to her limbs. Within moments, Malyia became her smiling, exuberant self, grabbing van Houtryve's nose, tossing plastic balls and bringing a plastic spoon to her mouth with the help of a cuff attached to her wrist.
"Good job!" van Houtryve and therapist Carly Reynolds said as Malyia scooted toward them and stretched her arms wide.
The therapy may look like play, the women said, but it will play a critical role in Malyia regaining her independence.
The Shriners therapists are working to "desensitize" the heavy, tangled scars on her partial limbs, where surgeons removed dead skin and attached grafts. Malyia wears her custom-made Lycra-based sleeves nearly 24 hours a day. The sleeves exert pressure on her scars, flattening them in preparation for attaching prosthetic legs, said Cheryl Hanley, occupational and physical therapy manager at Shriners.
On a recent day, van Houtryve and Reynolds encouraged Malyia to try to hold herself upright, placing her on a soft pad, the hard floor and finally inside a tub full of colorful plastic toys to expose her damaged limbs to various surfaces.
Malyia could be standing up on custom-built legs within a couple of months, they said. In the meantime, she is using what is left of her limbs to learn once again to scramble, play and feed herself.
Her situation is complicated even by the standards of Shriners, which accepts the most challenging burn and orthopedic cases from around the world, said Hanley.
"Losing some of all four of the limbs is extraordinary," Hanley said. "We have seen it, but not very often.
"What Malyia and her family have been through, none of us can even imagine," she said. "The bottom line is that this is devastating."
Will Malyia be able to play sports someday? Drive a car? Dance at the prom? Graduate from college? Will she still be an entertainer, as her parents once predicted?
"Obviously there will be limitations," said Hanley.
"But Malyia's spirit is fierce. That will take her far."
Editor's note: This story was changed April 12 to correct the spelling of Leah Yang's name.