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Thursday, January 17 , 2019, 3:57 am | Light Rain 60º

 
 
 
 

Local Dad to Run, Raise Funds for Rett Syndrome at Boston Marathon

Chris Kolendrianos is attempting to raise $5,000 for April race in support of 8-year-old daughter

Megan and Chris Kolendrianos dote on their 8-year-old daughter, Sorel, who has Rett Syndrome. Her father plans to raise $5,000 and awareness for the neurological illness by running the Boston Marathon in 2014.
Megan and Chris Kolendrianos dote on their 8-year-old daughter, Sorel, who has Rett Syndrome. Her father plans to raise $5,000 and awareness for the neurological illness by running the Boston Marathon in 2014.  (Lerina Winter / Megan Sorel Photography)

Running really isn’t Chris Kolendrianos’ thing, a fun fact the Santa Barbara man shared in the same breath as his plans to conquer the Boston Marathon.

“Training” was not a word the 43-year-old father of two used, either, and certainly wasn’t his No. 1 priority.

Instead, Kolendrianos described aloud a vision he expected to see around mile 20 of the 26.2-mile trek in April 2014, the moment when his sweaty body seemed beaten.

His mental picture: the big brown eyes and wide grin of Sorel, his 8-year-old daughter who has Rett Syndrome — a neurological disorder that robs the third-grader of her ability to speak or independently move her hands.

Kolendrianos recently decided to run the Boston Marathon to raise awareness and money for a Rett Syndrome cure.

Thinking of Sorel, he said, all things are possible.

“Rett Syndrome is very rare, so a lot of doctors don’t know anything about that,” said Kolendrianos, whose daughter was diagnosed with the disease in 2007 at 17 months old. “It’s basically up to people like us.”

His wife, Megan, who ran the Boston Marathon for Sorel in 2012, called her husband’s humble bluff.

“He basically started running because of her,” Megan Kolendrianos said. “She walks a marathon a day. You run because she can’t, and maybe one day she will.”

Her husband — a runner within just the last two or three years — downplayed heroics, saying it’s merely his turn to race.

“In a nutshell, for me, it’s really easy,” Kolendrianos said. “She’s my big inspiration. There will be other people with Rett Syndrome. I know in my heart this will one day be cured.”

Kolendrianos aims to raise $5,000 before the big day, running alongside 18 others on Team Rett to raise funds for the Rett Syndrome Association of Massachusetts.

Money will go toward new, expensive drug trials happening in Boston right now, experiments that are so far showing significant improvement in the communication skills of those with Rett Syndrome — most of them young girls just like Sorel.

Kolendrianos said the ultimate goal would be to get his daughter into the drug trial, improving her already progressing communication skills that involve blinking her eyes.

“She’s making choices,” Megan Kolendrianos said.

Sorel was never supposed to sit up by herself, and yet she continues to impress, even riding horses with a walker close by, her proud father added.

The Kolendrianos family, which also includes 4-year-old Xander, said they have been blessed with overwhelming community support in the past, organizing paddle events and other fundraisers for Sorel’s medical bills.

They hope to draw on that support again, sending out the call around the holidays, when people tend to think about what matters most.

“I’m going to kill it,” Kolendrianos said of the marathon, smiling at his daughter who sat on the other end of the family's kitchen table.

“Maybe this year your daddy’s going to beat your mommy’s time.”

Click here to make an online donation to the Kolendrianos family cause.

Noozhawk staff writer Gina Potthoff can be reached at .(JavaScript must be enabled to view this email address). Follow Noozhawk on Twitter: @noozhawk, @NoozhawkNews and @NoozhawkBiz. Connect with Noozhawk on Facebook.

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