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Mike Tharp: A little child, living on borrowed time, needs a big break

SUN-STAR PHOTO BY LISA JAMES
JJ clutches her tiny fists as spasms overtake her muscles.
December 31st, 2008
SUN-STAR PHOTO BY LISA JAMES JJ clutches her tiny fists as spasms overtake her muscles. December 31st, 2008

JJ doesn't feel that heavy -- 28 pounds. She feels like Raggedy Ann.

Her long-lashed eyes flutter as she squirms in her pink flannel pajamas with white flowers. Her eyes are the color of coffee. Her left thumb, no bigger than the tip of a pen, is lodged between her first two fingers.

She smells like milk and soap. Then JJ -- who will be 3 on April 14 -- suffers a spasm.

Her dark-haired, copper-skinned frame jerks as if a shock has passed through it. One did. Every day, every hour of every day, her brain is rocked with tiny earthquakes. Each one sets her back a notch.

JJ can't see. She hears only white noise. But she can sense a lot of vibes in the world. Now she senses that she wants to go back to the arms of her foster mother, Ty Baker. So she puts a fist the size of a lime to her harp-shaped lips. She makes small moans.

JJ is hungry.

She is also on borrowed time.

Always has been.

She was born early.

Then things got rough.

When she was three months old, someone she knew and trusted was having a bad day. This person got mad at the baby's crying. So this person picked her up and shook her. Hard. Many times.

(JJ is her nickname. Her real name is withheld because legal action is still pending in the case, and her foster family fears retaliation from her biological father, an alleged gang member.)

JJ was flown in a helicopter to a hospital. Soon she had a foster mother. Baker was told the little girl wouldn't make it. She was too damaged. Ty and her daughter Heather, now 31, didn't buy it. They went to their knees. They sought a higher power.

JJ made it through that part of her life.

Barely.

She has cerebral palsy. Traumatic brain injury (the same wound caused by IEDs for at least 9,500 GIs in Iraq). Infantile spasms. Seizure disorder. She's had two brain surgeries.

JJ can't sit up by herself. She can't walk or talk. A row of stuffed giraffes in her bedroom is matched by a lineup of equipment that would make NASA proud. Scattered throughout the two-bedroom apartment: A hydraulic stander that keeps her elevated at various angles. Hard plastic walking shoes that look like an elf's ski boots.

A machine that emits the sound of ocean surf, a heartbeat and "Twinkle Twinkle Little Star." (Her foster mom and sister Heather believe she can "hear" a few sounds.) A U-shaped pillow because she can't lie flat. A stroller-sized wheelchair. A feeding chair that supports all her little limbs. A blue bath chair. A Bumble Bee summer chair that lets her roll around a bit. A Bumble Bee car seat.

A sign over her bed reads: "Thank heaven for little girls."

JJ travels all over the Valley to doctors and dentists. They all do their best, and they help some. "The foster mom and daughter are very dedicated," says one physician who has treated JJ. "I try to be very supportive because it's a labor of love -- she's taken a lot of hits."

But Mama T, as her foster mom is known by the dozen or more foster kids -- ages 2 to 17 -- she's taken in over the years, has found a treatment she thinks will improve the life of the little girl she's cared for since July 2006.

She wants to take her for a series of "dives" in a hyperbaric chamber at a company in San Bernardino. The theory is that the chamber re-oxygenates the brain and encourages that organ to redevelop parts that have been lost. Doctors perform a brain scan before and after each treatment to measure what happens.

While successfully used for people who've almost drowned or for deep-sea divers recovering from the "bends," the hyperbaric chamber remains an experimental technique for brain injures. The science is legitimate, but it remains an alternative, not a mainstream, treatment.

"The place we want specializes in shaken babies," Ty says. "There's tons of testimony." (It's called Rapid Recovery Hyperbarics and its Web site is www.hbot4u.com) The foster family thinks the sessions will decrease JJ's infantile spasms. They think it may help her eyesight.

"If she's only 50 percent better, that would be a tremendous success," says Ty.

There's a slot open in San Bernardino in February. The treatment is said to do the most good before the age of 3. JJ turns 3 in April. She would do two dives a day in the oxygen-rich chamber. A month of dives costs $5,000.

Ty and Heather have done their best to get it. They collected used cell phones and ink cartridges. They staged a Christmas catalog fundraiser. They sold magnets. Nothing made much money. Ty is on disability. Heather, a former preschool teacher, isn't working either.

As a foster parent, Ty herself isn't paid, but gets some county money for child care, depending on age and special needs. Not enough for the San Berdoo dice roll.

Their church, Apostolic Tabernacle, has raised $1,000.

"They constantly love that little girl, whatever circumstances arise," says the church's pastor, the Rev. Sam Emory.

The Bakers bought a van to ferry JJ around the Valley. One doctor is in Madera. A dentist is in Hanford. (JJ's teeth have had five caps and six cavities because her system is so weak.) A therapist is in Turlock. They spend $500 a month on gas.

The special Stage 3 baby food -- the only kind she can eat -- costs around the same. A special drinking cup runs $12. They take her horseback riding for therapy in Stevinson when they can because, with a back support, it helps her hips move at the same time -- "to tell her brain to tell her legs to go."

That also costs money.

There's not a lot left over to put toward an expensive medical treatment not covered by insurance.

For sure not $5,000.

No one knows what will happen even if she gets into the hyperbaric chamber. It may help. It may not.

JJ's prognosis? "I don't know," says one of her doctors.

"We're looking for a miracle," Ty admits. "She is such a fighter. She came into this world with all the odds against her. She had a very good chance when they released her (after being born prematurely). When somebody shook her, that took away her chance."

Shyan, Ty's granddaughter from her other daughter, is already 3. She tries to play with JJ. When JJ can't pretend with dolls and her, Shyan says, "I forgot -- she's broke."

The two grown women take turns holding JJ. They bathe her. Feed her. Massage her. "We both have to give up some things," Ty says, "so that God would work it out, whatever the plan was."

And what's the plan? "To love her. Take care of her. Be her voice. Do everything I can to help her. That's the immediate plan. Tomorrow? I don't know."

They think JJ calls Ty "Anya," or at least a sound close to it. She coos and gurgles and wiggles before she takes a bottle and then lies still in Ty's arms.

The hyperbaric chamber is important "because we're giving her the best shot at quality of life," Ty explains. "If we try and it happened to fail, at least we know we had tried. We won't have those 'what-ifs' in the back of your head."

One of the vibes the Bakers believe JJ feels is music. Especially when they go to church. Especially when the choir sings "Word of God Speak." Some of its lyrics:

I'm finding myself at a loss for words

And the funny thing is it's okay

The last thing I need is to be heard

But to hear what You would say

Whether you believe in God, Allah, Buddha, Yahweh, something else or nothing at all, you know when you hold JJ that there's a spirit inside her. A spirit that's been fighting for almost three years. A spirit that never wants to give up. A spirit that deserves a chance.

Now I'm finding myself at a loss for words. And the funny thing is it's OK.

Executive editor Mike Tharp can be reached at (209) 385-2427/2456 or mtharp@mercedsun-star.

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