Dolores Arredondo has not left her daughter's bedside since arriving at Children's Hospital Los Angeles six weeks ago. Her daughter Alondra, 14, lies in bed with tubes inserted to help her breath and fluids to feed her.
The East High School freshman is extremely thin at just 65 pounds.
As a small child, Alondra was a picky eater, had a poor appetite and was always thin.
"I thought she would grow out of it and eventually gain weight," said her mother.
Despite regular check-ups, doctors never inquired about her weight, said the mother. But later things began to take a turn for the worse and Alondra began passing out. What was going on? Doctors weren't able to say.
At around the same time, Alondra's younger brother, Jorge Jr., began exhibiting some strange symptoms of his own. As a small child, his feet were very weak and he was able to twist his feet in all sorts of odd ways, said his father, Jorge Sr.
Years later at school his condition worsened. The slightest push would result in a fall; he was unable to sustain his balance. Walking up stairs was a struggle, running became impossible.
It wasn't until Jorge Jr. was referred to Valley Children's Hospital in Madera that Dr. Joseph Shen tested both Alondra and Jorge for what he suspected might be the cause of their condition. His hunch proved to be true.
The diagnosis? TK2-related mitochondrial DNA depletion syndrome. It's a genetic, hereditary disease that wastes the muscles, caused by a disruption in the mitrochondria. Loss of motor skills lead to an inability to walk, stand, eat or talk. Breathing, as in Alondra's case, can be difficult.
"Kind of like a cell phone that's running out of battery," said Dr. Joseph Shen, who is also head of Genetics Department at University of California-San Francisco in Fresno. Alondra has the worst of it. "Her illness is progressing really fast and her lungs are only functioning at 11 percent," said her mother.
Alondra speaks very softly, almost in a whisper. But she looks straight at you with big brown eyes and her words are clear. "I wish I were no longer sick."
She yearns to be active again in her dance troupe at St. Joseph Church.
Brother Jorge is showing different symptoms: He is very weak in his leg muscles and walks with great difficulty. Unlike Alondra, he is not suffering from weight loss.
Making his way to his father's truck, he stops and waits for an older cousin who lifts him up and places him inside.
While there are variations of mitochondrial disease, this type TK2 is least common. "It is very, very rare. About a few dozen cases that's out in the world," said Dr. Shen. In fact, the doctor had never seen this particular type of diagnosis in one of his patients before Alondra and her brother.
But here's the kicker: What are the chances that a brother and sister would both have it? To make matters worse, there is no cure. There aren't even any FDA approved medications to fight it; it draws no interests from big pharmaceuticals that might spend money on research to find a cure.
But an alternative treatment is in the works, and both Alondra and brother Jorge are prime candidates. It's being done by Dr. Michio Hirano, a neurologist at Columbia University Medical Center in New York. It's an experimental therapy that has shown signs of helping other stricken children.
Dr. Shen is excited about Alondra's chances of improving with this drug. In fact, Dr. Michio has already seen Alondra once and is prepared to start treating her.
But there are serious financial obstacles in the way. The parents' health insurance does not cover this treatment as it is experimental. Each treatment costs around $2,500. Then there's the costs of making special arrangements to fly Alondra to New York, plus related expenses.
Jorge Sr. is a construction worker whose salary comes nowhere close to meeting the expenses. Dolores works for the Bakersfield City School District as a custodian but has been out for six weeks and likely more. When word of the family's plight became known, a coworker started raising money. Parishioners at St. Joseph's Church sell food after Sunday mass to raise money. And local businessman Phil Rudnick, owner of Airport Valet Express, wrote a $2,500 check to cover Alondra's first treatment despite not knowing the girl or her family personally.
While Dolores tends to Alondra in Los Angeles, her husband has his hands full tending to Jorge Jr. and two younger siblings in Bakersfield. Somehow this couple manages to stay strong though there are moments when their emotions are hard to control; they feel helpless because they're not able to do more for their children. She credits her faith for remaining strong.
"As a mother I wish to have healthy kids, too," said Dolores, her voice cracking. "I'm blessed for having these kind of kids."
Donations for Alondra can be made at www.gofundme.com/help-alondra-survive
A bank account is also available for donations. The Wells Fargo bank account number is 1040378869. It is under the name Jorge Arredondo.
Contributing columnist Jose Gaspar is a news anchor/reporter for Telemundo Bakersfield and KGET. Email him at firstname.lastname@example.org. His work appears here every third Monday; the views expressed are his own.