Local runner commits to Chicago Marathon — for a cause

Cornelia de Lange Syndrome affects between 1 in 10,000 and 1 in 30,000 people.

By those statistics, somewhere between three and eight people in Lawrence are currently living with the syndrome.

But just one Lawrence resident will be running in the Chicago Marathon on Oct. 9 as part of 20-member Team CdLS. Jonathan Larance, public information officer at the Kansas Department of Health and Environment and a Lawrence resident for the past eight years, will be running in his second marathon ever in support of his cousin, Emma Thompson, of The Woodlands, Texas.

"She's a gift from God and a shining star to everyone she meets," Larance said.

Emma, 13, was born with CdLS. She and Larance have always been close. He'd been looking to run another marathon — his first was several years ago — and when this opportunity came up, after the regular registration had already closed, he knew the opportunity was right.

But in order to be a part of Team CdLS, he had to commit to fundraising. His 20-member team has a goal of raising $70,000 for outreach, research and support for the battle against CdLS. His individual goal is $2,000 (and donations can be made online). With just a few weeks until the race, he's approaching the goal with just online donations and he said he's expecting a check from his brother's school, as well.

"They had a dress-down day, where everyone paid to wear casual clothes," he explained.

Larance has been training all summer for the marathon. Even in the hottest days of July and August, he was running 15 or more miles to prepare. He said he uses the song Tik Tok, by Ke$ha, to keep him going through the hottest days of summer. It'll be the song he uses to power himself to the finish line as well.

And Emma will be waiting for him there, cheering him on. His parents, brothers and other friends and family also plan to be in Chicago to cheer him on when he finishes.

Tagged: marathon, kdhe, cdls, running

Comments

Angela Heili 6 years, 8 months ago

Way to support family Jonathan! It's awesome to see someone rally for a family member like that.

A little information on what the syndrome is might be a good addition to this article. Here's what I found on it:

As with many other syndromes, individuals with CdLS strongly resemble one another. Typical facial features include thin eyebrows that meet in the middle, long eyelashes, a short upturned nose, and thin downturned lips.

Other characteristics include low birth weight (often under five pounds), slow growth, small stature, and small head size. Other features may include excessive body hair and small hands and feet. Common medical issues include gastro- esophageal reflux disease, heart defects, seizures, feeding difficulties, vision problems, and hearing loss. Limb differences, including missing arms, forearms or fingers, are seen in about 25 percent of individuals with CdLS. Behavioral and communication issues and developmental delays often exist.

CdLS is not a “one size fits all” condition. An individual may have many of the following traits, or only a select few. Geneticists establish the diagnosis after evaluating all the criteria.

Developmental Delays, Gastroesophageal Reflux Disease (GERD), Behavioral Issues similar to autism, Prominent Facial Features such as thin eyebrows that often meet at the midline (synophrys), long eyelashes, short upturned nose, thin downturned lips, low-set ears, and high-arched palate or cleft palate. Limb Differences such as small hands and feet, incurved fifth fingers (clinodactyl), partial joining of the second and third toes, proximally placed thumbs, and upper limb abnormalities, including missing fingers, hands or forearms effect those with CdLS.

Finally, other system problems can occur such as small hands and feet, incurved fifth fingers (clinodactyl), partial joining of the second and third toes, proximally placed thumbs, and upper limb abnormalities, including missing fingers, hands or forearms.

It's named after Dr. Dr. Cornelia de Lange, a Dutch pediatrician, who in 1933 described two children with similar features. The first child had pneumonia and feeding difficulties. She was very small for her age, with a proportionately smaller head circumference. Other unusual facial characteristics were noted by Dr. de Lange. Soon after, she saw a second little girl with common medical problems and physical characteristics. Nowhere was the puzzled physician able to find a similar patient described in medical literature.

The syndrome is sometimes referred to as Brachmann-de Lange Syndrome after Dr. W. Brachmann, who described a similar patient in 1916. Dr. de Lange may have overlooked his report because he concentrated on characteristics of the upper limbs and wrote on the facial symptoms less specifically.

Jonathan Kealing 6 years, 8 months ago

Thanks for adding that, Parrysmom. It certainly is valuable information!

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