Cartoons? Yes. Clothes? No.
And so it was that the 9-year-old wanted to sit in his parents' van out in front of the house one day and watch a movie on the little screen in the vehicle. His mom, Dana, got Christian situated in the van and went back in the house, where she could keep an eye on him from the living room window.
The boy had intentionally taken off his clothes - he does that all the time at home - and unintentionally pushed the emergency button on the van's OnStar system. Because Christian's vocabulary is limited to a few basic words and the dispatcher could not tell what was going on, local officers were given the van's location and sent to investigate.
The boy they found, it turns out, is one whose genetic makeup could hold solutions to babies born with heart defects.
Christian has a birth defect so rare there are fewer than 100 cases of it documented worldwide, his parents say. Called both Jacobsen Syndrome - after the Danish physician who discovered its cause in 1973 - and “11q deletion,” it results when a child is born with parts of the 11th chromosome missing.
It can lead to heart problems, abnormal growth, hearing loss, speech and language problems, distorted facial characteristics, mild to severe mental retardation, behavioral issues and more - it all depends on what parts of the 11th chromosome are missing.
In Christian's case, there were only two other children in the United States with a genetic makeup similar to his.
One died of her heart defect.
But the hole in Christian's heart is mutating differently.
It's getting smaller.
Christian was born when his parents, Ryan and Dana Avison, started college at Dickinson State University in North Dakota.
They were both 19 years old.
The young parents first became concerned that something was not right when Christian reached the age where a baby should be able to hold up his head.
He couldn't.
“The doctors kept telling us it was just because he had a big head,” Ryan says. “We finally went on our own to a neurologist in Billings.”
Dr. Annette Grefe diagnosed Christian with Jacobsen Syndrome.
“We were kind of relieved to know there was a name for it,” Dana says.
“But after the doctor said, ‘Here's what it is,' she said, ‘We don't have much of anything on it,' ” Ryan adds.
In the years since, the Avisons have learned plenty - and learned there is plenty doctors still don't know about 11q deletion.
People with Jacobsen Syndrome are more prone to several types of cancers because, Dana says, “they were born with only one tumor-depleting gene.”
“Essentially, there's no cancer-fighter in them,” Ryan says.
That means Christian cannot be given the human growth hormone that could spur his body to develop more normally.
The children may also be chronically constipated, can't sleep, bruise easily - pick Christian up, and his armpits turn black and blue - and often have a bleeding disorder called Paris-Trousseau Syndrome.
When he was younger, Christian often suffered seizures; one time they came so often and so severely it landed him in the intensive care unit for three days.
The seizures, and other problems such as the sleep disorder, are now under control with medications, and Christian wears hearing aids in both ears.
Other things can't be controlled. Christian is a sweet and happy kid most all the time, but don't dare tell him you're taking him to Wal-Mart, then stop along the way to fill up with gas. The temper tantrums erupt out of nowhere, although they disappear almost as suddenly as they show up.
“There's not a day goes by that Ryan, Declan or I aren't bit, slapped, kicked or have our hair pulled,” Dana says.
Declan is Christian's 2-year-old brother. For many years after Christian was diagnosed, the Avisons swore they wouldn't risk having another baby.
“But I decided I had to have a normal child,” Dana says. “I had to have that experience.”
At the age of 2, Declan can be a handful all by himself, of course. Add to that a 9-year-old who can't be potty trained, and the demands of parenthood seem to multiply by 10.
Through it all, Ryan and Dana both earned their college degrees. Dana is a registered nurse. Ryan got his degree in psychology from Salish Kootenai College three days before he, his brother Kevin and their parents, Ken and Tami, opened the Cove Deli and Pizza in Polson in 2003.
Christian loves visiting his father at work, where he builds his own pizzas.
“We don't let him near the oven, of course,” Ryan says. “But he makes whatever he wants. It's different every time.”
He's a favorite of many of the teenage employees at the Cove, and Christian is especially fond of one, Tasha Conrad - he calls her “Ta Ta” and visibly brightens at the mention of her name - who occasionally babysits for the Avisons.
That's a luxury the young couple hasn't always had.
“It's been a strain on our relationship,” Ryan admits.
Christian is integrated into a third-grade classroom in Polson, where an aide works with him throughout the day. When he reaches adulthood, the Avisons envision placing Christian in a facility that can care for him for the rest of his life, and they can visit him for the rest of theirs.
“I've never understood special-needs kids who are kept at home their whole life until the parents die, and then the kids are 40 or 50 and have to be placed someplace else,” Ryan says. “I think it's better if they make that move when they're 18.”
Ryan himself has a special-needs brother who lives in just such a facility in Sidney, near Fairview, the town they grew up in.
Dana is from Killdeer, N.D.
When Christian's behavioral issues worsened last year, the Avisons put him in the Respite House in Kalispell, which cares for children with developmental disabilities, for part of the summer. The stay not only helped turn around the behavior problems, it gave the Avisons a vacation from the nonstop demands of a 9-year-old with Jacobsen Syndrome.
Still, they can't believe the questions they've been asked.
“One is, ‘How do you do it?' ” Dana says. “Until Declan was born, we didn't know any better. Dealing with a disabled child was always the normal thing for us.”
“I wouldn't change a thing,” Ryan adds. “We've been asked if we knew - and of course we didn't know - that Christian had Jacobsen Syndrome before he was born, would we have aborted him? Of course not - that's just ridiculous.”
And now, their son may hold some genetic answers to heart defects in newborns.
Why is his heart getting better when the little girl in New York born with the same mutation in her gene died?
Dr. Paul Grossfeld of the University of California at San Diego, one of the country's leading researchers into 11q deletion, “is so excited about Christian,” his mother says.
“Just imagine if Christian contains information that will help cure heart defects,” Ryan says.
The Avisons attend an annual conference for families of children with Jacobsen Syndrome, where Grossfeld will examine Christian. The conference has become an important part of their lives.
While Dana and Ryan have lots of family support in Polson - Ryan's grandparents, Wes and Madge Vert, live here too - there is no one in town who can directly relate to what the Avisons deal with every day.
Heck, there's no one else in the state who can.
“The closest people to us with a child with Jacobsen's lives in Chicago,” Ryan says. Emma Kotecki, the girl in Chicago, and Christian have become great friends during the once-a-year conference.
The Avisons approached the Missoulian about doing a story about Christian. They're not looking for money to help with medical expenses - though they certainly wouldn't be upset if anyone wanted to donate to the 11q deletion research being done nationally - nor do they seek your sympathy.
They just want people to learn about the rare birth defect that afflicts their oldest son.
And they wanted you to meet him. They think it's pretty neat he could turn out to be even more special than anyone thought.
On the Web
To learn more about Jacobsen Syndrome, visit http://www.11qUSA.org You can find pictures of both Christian Avison and his friend Emma Kotecki on the site.
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Jon Pattullo wrote on Sep 18, 2008 2:42 PM: