Alexis Maestaz: 'Happiest Little Girl In The World'
Christine Maestaz used to tell her daughter Alexis stories of an idyllic future life, one she knew Alexis would probably never live to see.
"Once upon a time, there was this little girl named Alexis, who had a beautiful home with a pool and a game room," Christine Maestaz would say. It was Alexis' favorite story, and she asked to hear it every night.
"Her cousins would call and ask her to drive them to the WIC in her Cadillac," Maestaz continued, referring to the government food program called Woman, Infants and Children. "But she didn't need to go, she was rich. And afterward, they would all have a big barbecue."
Unable to move her limbs without help, 12-year-old Alexis Diamond Maestaz lived in the best world her mother could possibly provide for her at the family's home in Rosemead.
Maestaz and her husband Tommy made sure Alexis had a happy social life, attending birthday parties and visiting school friends. When other children would stop and stare, Maestaz encouraged them to say "Hi," knowing Alexis was always ready to make a new friend.
They always found a way to include Alexis in family outings with her two sisters, strapping her wheelchair into the family van for trips to the beach, Disneyland and Knott's Berry Farm.
"Whatever we did, she did," Maestaz said. "And that was to the very end."
A rough beginning
More than 50 people
have died of swine flu in
Los Angeles County.
We feature some of
them here. Click
on the headshots
to read their stories.
Alexis is technically Maestaz' grand-niece, the daughter of a girlfriend of her nephew's son, but to Alexis, she was always simply "Mom." Alexis' biological mother, a 16-year-old with a drug problem, gave the girl up for foster care soon after she was born.
Maestaz, who was 49 at the time, already had three grown children and was enjoying her golden years. But when she learned that Alexis and her 3-year-old sister Emily had been placed in a home, she began a bitter battle with social workers to gain custody of the girls.
Initially her husband Tommy, a retired maintenance worker, thought she was crazy.
"At first, he was like, 'I don't know what you're doing, Chris,' Maestaz said. "But I made the decision that I would take them. I was going to change my life for them."
Her husband came around, and last year the couple also adopted 3-year-old Savannah, Emily and Alexis' biological sister.
When Maestaz gained custody, she received no record of Alexis' medical conditions or medications. In her first days with the Maestazes, baby Alexis had trouble breathing and vomited everything she ate.
Soon after, Alexis was diagnosed with scoliosis, reflux and arthogryposis, a rare disease that causes joints to stiffen and deform. Her childhood was a flurry of doctors appointments and hospital visits.
Because she had trouble eating, doctors suggested inserting a tube directly into Alexis' stomach. The couple refused, and instead Tommy Maestaz taught Alexis how to chew by sitting her on the kitchen table and giving her tiny pieces of toast.
With years of speech and physical therapy, Alexis learned to speak and was able to attend a special-needs class at Byron Thompson Elementary in El Monte. But doctors told Christine that Alexis would never walk.
"That broke my heart," Maestaz said. "But it was just another thing, and we moved on from there."
A life of stories
A dreamer with an effervescent personality, Alexis was fascinated by other people and their lives.
"Alexis was all in her own little world, but she liked stories," Maestaz said. "Not from books, but stories you made up about the day you spent and people you met."
When the stories her mom and grandmother told wouldn't suffice, Alexis would call up her myriad friends on her bejeweled purple cell phone.
Always smiling and ready to talk, Alexis relished her day-to-day interactions. Taking the school bus was her high, and she would spend the entire ride chatting.
One day, she came home with the bus driver's phone number.
"I said, 'You can't call the driver!'" Maestaz said, "And she said, 'Yeah I can mom! I asked her, she's got T-Mobile.'"
She thrived in school, winning awards and medals that she showed off, beaming, in the photographs that cover the walls of the Maestaz home.
Unfortunately, going to school exposed Alexis' vulnerable immune system to more than it could take. When she was 8, Alexis caught pneumonia and was put on an oxygen tank.
Doctors ordered that she be pulled out of school and tutored from home.
"If kids are getting sick, she would get it," Maestaz said. "But her sickness didn't go away, it stayed."
Keeping Alexis healthy was a constant struggle. Maestaz kept a hand sanitizer dispenser next to her front door and never allowed anyone with so much as a sniffle inside the house.
An operation for Alexis' scoliosis was canceled when her doctor said that because of all of her medical conditions, she would probably die on the operating table.
"He said for us to just keep her happy and give her a full life," Maestaz said. "And we did. She was the happiest little girl in the world."
'She was our life'
Aug. 27 was a girls' day. Maestaz and her niece were running errands with Alexis, the wheelchair and oxygen tank packed into the back of the family's burgundy van.
After they dropped off Maestaz' niece, Alexis said she was hungry for a burrito.
Maestaz fed her, making sure she ate slowly. But after she finished, Alexis began gasping for air.
"Don't do this to me," Maestaz said as she sped toward Children's Hospital in a panic.
Bursting through the front door, Maestaz screamed for help and began praying that Alexis would not die.
Doctors and nurses rushed Alexis in for treatment, and they emerged hours later to say that Alexis had choked. She was breathing again but was still unconscious.
Three days later, Alexis tested positive for H1N1 flu.
Still bewildered, Maestaz wonders how Alexis caught the flu if she wasn't ill when she checked into the hospital. Doctors told her she could have had it for four days without any symptoms.
Maestaz and her husband watched Alexis around the clock and slept by her hospital bed.
"We always did that when she was in the hospital," Maestaz said. "She was our life."
On Aug. 31, Alexis was gone.
"A lot of people don't feel the same pain you feel from losing your child," Maestaz said. "Especially a child with needs. It's a pain you can't get over that easily."
Since then, Maestaz and her husband have been distraught, unable even to spend time with family or friends. A trip to Las Vegas with friends was planned, then canceled.
"We can't go with other people and break down like this," Maestaz said through tears.
Her husband finds it still too painful to stir up the memory of Alexis, but Maestaz said she recently found a measure of peace after a talk with her eldest daughter, Rachel.
"She told me, 'Alexis was an angel, and God will only let you have an angel for so long,'" Maestaz said. "And then she needs to go up and take care of other things He had intended for her."