“I think he has had a lot of attention,” his mom, Heather, told me when we met at a Bethesda Starbucks not long ago. “He doesn’t like a birthday cake, or singing to him with candles.”
Not that he’s shy or anything.
“I always say that everybody who gets to meet Colton is better for it,” Heather said. “He’s just a rare person. He always has a smile on his face. He’s always happy, always telling a joke. He’s very unaffected by it.”
“It” is the ailment that stymied doctors for the first two years of Colton’s life.
Colton has two older sisters, Alexis and Ava. Ava, the younger, was not yet 2 when Colton was born, so Heather was very familiar with the various milestones that babies achieve as they grow into toddlers.
“I knew pretty quickly his tone was off: his support of his limbs and his hand and his neck,” Heather said. The pediatrician told her not to worry, that boys just matured at a different rate than girls. Heather thought something else was going on.
The family’s journey to figure out what it was eventually took them to Children’s National, but before they arrived there, a doctor elsewhere thought it likely that Colton had a central nervous system disorder and said he would probably never walk, talk or go to a regular school.
Heather said that after getting the news, she and husband, Mark, “sat in the parking lot and bawled.”
As Colton grew into a toddler, he did have trouble walking. His parents got him a little walker and a little wheelchair. More worrying, though, was the pain that Colton experienced. His muscles would spasm, his feet would cramp. There were frequent trips to the emergency department at Children’s for pain management.
It was on one of those trips that Bennett Lavenstein was summoned. Dr. Lavenstein is a professor of neurology and pediatrics at Children’s. It would be an exaggeration to say that he took one look at Colton and proclaimed, “I know what’s wrong with this child,” but not much of an exaggeration.
Dr. Lavenstein noted Colton’s abnormal posture, his unusual gait, the odd in-turning of his feet. He thought Colton might have a genetic condition called dopa-responsive dystonia.
He probably hoped that Colton had dopa-responsive dystonia, or DRD, because of the middle word in that name: responsive. DRD is a condition that can be almost miraculously treated with regular doses of L-dopa, which the body converts into dopamine, a neurotransmitter required for muscles to make smooth, graded motions.
“The response to replacement with L-dopa is so remarkably gratifying,” Dr. Lavenstein said.
It worked for Colton.
He still faced other challenges. He often had difficulty breathing, a condition Heather said might have been related to his dystonia. A brain cyst has needed constant monitoring. Colton also had the dubious distinction a few years ago of being one of the first area cases of the H1N1 flu virus.
Because of his health problems, Colton wound up missing almost the entire third grade. But he has improved every year since then, able, as he grows, to take larger doses of L-dopa. He hasn’t had to go to the emergency room in 18 months, Heather said, rapping on the wooden table with her knuckles.
“I used to call the ambulance like other people called for pizza delivery,” she said with a laugh.
Contrary to the dire prognosis, Colton walks. He talks. He goes to a normal school. And he has a brother, 8-year-old Connor.
“They’re inseparable,” Heather said. “He really helped Colton move up in his milestones. They learned how to ride a bike together. They learned how to swim together. They’re like twins.”
Through it all, Colton has been remarkably stoic. In fact, Heather said, he came to love going to Children’s National, where he could pick the flavor of his anesthesia. (Chocolate was his favorite.)
“Colton is fearless, even from a tiny little kid standpoint,” Heather said. “It didn’t matter how many times he would fall, he would get up and try again.”
Doctors who try again is what all parents want for their children. That’s what we have at Children’s National. By participating in our annual fundraising drive, you can help ensure that same high level of care for even the poorest kids in our community.
To make a tax-deductible gift, visit childrensnational.org/
washingtonpost or send a check (payable to “Children’s National”) to Washington Post Giving Campaign, c/o Children’s Hospital Foundation, 801 Roeder Rd., Suite 650, Silver Spring, MD 20910. Our deadline is Jan. 10.
Your gift today can make the difference in the life of a child.
One of my false answers in Wednesday’s column was doubly false. The winery owned by Tareq Salahi was the Oasis Winery, not the Tarara Winery. Leesburg’s Tarara makes an award-winning assortment of varietals and blends, overseen by Jordan Harris.
For previous columns, visit washingtonpost.com/johnkelly.