A boy and his dog

Josh Ghiz may never know how special he is. Blind to the world around him, consumed by the world within, the 9-year-old never saw the artwork that took hours to paint, but only minutes to sell on his behalf.

He never read the touching letter that a classmate sent to Josh's mother, along with a $1 bill.

He never heard the auctioneer who donated her time and voice on a Saturday night for a boy she didn't know.

But on Monday, Josh's life will change because so many people reached out for the boy who can't reach back. On Monday, Josh will have a motive to stay focused on the world that cares so much for him and a reason not to get lost in his own mental wasteland where to feel pain is sometimes better than to feel nothing at all.

The story began last August when the Ghiz family, all five-and-a-half of them (if you include Gwen, who was on the way), moved from Utah to Jackson. Alex and Racine Ghiz brought with them a special boy named Josh, a son who has one of the most severe cases known of 18 Q-minus syndrome in the world.

They began the daunting and critical task of finding new doctors, specialists, therapists and educators who could deal with a child who is both blind and deaf and cannot walk or talk. The last thing they worried about was a mutt in Texas and the thousands of dollars it would take to pay for her.

The dog was a Golden retriever mix named Cleo, short for Cleopatra.

Cleo had no idea how special she was. She could see, hear, run and play, but had no idea there was a boy in Jackson who couldn't.

And then one day a woman named Susan Bass saw the words "Free Dog" painted on a plywood sign along a row of mailboxes in Divine, Texas.

The details of life

Almost 10 years ago, Alex and Racine learned how the smallest components of the body can have the largest impact on life.

A few days after Racine gave birth to a premature, 3-pound baby boy, when she was still sore from her Cesarean section, she sat at a large table with several doctors and geneticists.

The doctors explained that every cell in the human body consists of 22 pairs of chromosomes, plus the two chromosomes that determine sex.

Under a microscope, the chromosomes are bent or curved, and the pairs aren't always identical.

In Josh's case, a part of the bottom half (the minus half) of the second strand, (the Q strand) of the 18th chromosome is missing. A single flaw in one of 46 parts of an individual cell would make Alex and Racine's first child incapable of having anything close to a normal life. Multiply one flaw times the millions of cells that make up Josh's body, and you get a boy with some major problems.

The doctors pelted Racine with statistics and information about 18 Q-minus syndrome. She knew her child was not going to be normal, but her c-section incision hurt too much to cry. So for a while, until she could let it all go, her expression was blank.

Family ties

Over the years, the Ghiz family grew from two to six. Josh is 9 and will turn 10 in February. Lily is now a 6-year-old, blond-haired pinball, a dramatic kindergartner who bounces around the house and likes to chase boys at school. Ivy is 3 years old with long brown hair and priceless expressions. Gwen, born in May, has fat, soft cheeks that would make a chipmunk jealous and big, dark eyes, just like her father.

The three girls are a handful.

And then there is Josh.

Josh demands more attention than anyone in the family and likely any child at South Elementary, where he goes to school. No one can know for sure what Josh is thinking, what he can see or hear. The last time Josh's IQ was tested, he had the mental makeup of a 4-month-old.

Josh sometimes pokes at his eyeballs, presumably to see the interesting lights and shapes; often he intertwines his fingers and bends them backwards as if playing "This is the church, this is the steeple." One time he bent a finger backward until it broke. It's possible that he was in such a trance that he didn't realize what he was doing to himself. But perhaps he knew what he was doing and thought the pain was a pleasant change of pace.

So those who take care of Josh -- Racine, Alex, Josh's teacher Chris Cartwright and others -- are constantly touching Josh, patting him, scratching him and caressing him to remind the 9-year-old that there is a world outside his mind.

Josh responds to that. He'll sit up straight when touched. Though he is deaf, he can hear enough that his body language changes when Racine talks in certain cheery tones. And if he's in the right mood, he'll smile and make pleasant sounds.

But Racine and Alex can't be everything to Josh at all times. If only someone could be by Josh's side 24 hours a day. ...

Making the move

Sweeping changes at Alex's office in Utah forced the family to transfer to a different law enforcement job in Cape Girardeau. While in Utah, Alex handled a police dog for a time. Rex would come home with Alex and spend time with the family. Rex was a good canine for police work, but he was not trained to help Josh. Josh would giggle and coo in response to Rex, but Rex didn't get the same job transfer to Missouri.

Soon after moving to Jackson, Racine visited a doctor to talk about Josh. The doctor had a special-needs child of his own and told Racine he regretted not getting his child a therapy dog. He advised Racine to get Josh a dog if she could.

To know a determined Racine is to know a moving train. When it comes to her children, Racine is the only person who can stop Racine. Just ask the insurance company representatives who try to refuse claims over petty technicalities. Eventually, the Little Mom that Could finds a way.

So Racine hit the Internet running and scoured cyberspace to see what dogs were available in the region.

Finally, one day last fall, Racine made contact with a woman named Susan Bass, a dog trainer based in Texas. Bass said she might be able to find a retired dog for Josh at a cost of $1,000 with another $1,000 in the bank for other future expenses. Bass told her that it may take some time to find just the right dog for Josh, considering the magnitude of his disability. And then, about 11 months later -- a little more than a month ago -- Susan passed by that plywood sign in Divine, Texas. "Free dog."

Bass couldn't resist. Training dogs is her passion, and that big plywood sign called to her. She finally gave in and decided to find out what this pooch had to offer.

She had been looking for Josh's dog for quite some time, and one dog after another failed to meet the specific qualities she was looking for. And the list was long.

Josh's dog needed to respond to verbal correction; love people more than other dogs and form close attachments; be adaptable and trainable; be able to focus and not overreact; have enough attitude to defend but be submissive enough to cower if another dog flashed its teeth.

When Bass finally decided out to check out the Divine canine, she was delighted to see a fluffy yellow dog waiting in the yard. Upon quick inspection, Bass found that the yellow dog was gentle.

After a few more quick checks, Bass told the dog's owner she would like to take Cleo home for some more specific tests. And like Cleo's coat, everything turned out golden.

Good news, bad news

Susan Bass had found a dog that fit Josh's profile. That was great news.

But Cleo had absolutely no training. That was bad news.

A retired dog would have cost the Ghiz family $2,000 -- one grand to buy the dog and another grand for additional expenses. But a retired dog would already have quite a bit of training.

If Cleo was to be put through the vigorous training she would need to help Josh, she would cost the Ghiz family at least $5,000.

With Alex and Racine, money is never an issue, but it's always an issue. They always find some way to get Josh the treatment he needs, but they get buried further underneath a financial avalanche.

Alex and Racine put Josh through an expensive new technique at the Cleveland Clinic in Cleveland, Ohio, not long before they moved here. Doctors used a procedure called bio-electrical stimulation to train Josh's muscles to swallow correctly. His food was going down the wrong pipe, and he developed pneumonia. A decision had to be made to go with the bio-electrical stimulation or insert a tube into Josh's belly and feed him with a syringe for the rest of his life.

Racine shuddered at the thought that Josh may lose two of the few senses he had left. The tube would take away taste and alter his sense of smell. So she found a way to the Cleveland Clinic.

Shortly after the bio-electrical stimulation, Josh got sick again and landed in the hospital. Over a three-month period, the Ghiz family racked up $20,000 on credit cards. This is not including the $400 a month they pay for a daily growth-hormone shot, which gives Josh more strength and makes him more alert.

Racine will skip one payment to pay off another. It's the only way.

Alex has a nice job. Perhaps too nice. The Ghiz family is considered middle class. They have a modest and well-kept home in a fairly new Jackson subdivision, but Alex doesn't make enough to pay the medical expenses and makes too much for Josh to qualify for Social Security.

Racine was told on more that one occasion that if she would only get a divorce, Josh would qualify for more financial assistance.

That was nonsense, Racine thought.

Organizations such as the Sikeston Regional Center and the Southeast Alliance for Disability Independence have helped the family quite a bit, but Alex and Racine continue to tred in a large medical debt.

But the Little Mom that Could was going to get her son a dog. She would organize a fund raiser. She had $5,000 to $6,000 to raise and four weeks to do it.

Coming Friday: Once the word is out that a handicapped boy in Jackson needs money for a dog, the heroes begin to emerge. Generous people of all ages come to Josh's aid.

bmiller@semissourian.com

243-6635