Friday, June 22 , 2018, 11:57 pm | Fog/Mist 60º


Local News

Santa Barbara Dad Takes on 50-Mile Run to Aid Research for Rare Medical Disorders

Chris Kolendrianos is racing to help find a cure for his daughter’s Rett Syndrome and a disorder that afflicts her friend

Chris Kolendrianos is running a 50-mile race on Catalina Island to benefit research for Rett Syndrome and CDKL5.
Chris Kolendrianos is running a 50-mile race on Catalina Island to benefit research for Rett Syndrome and CDKL5. (Kolendrianos family photo)

Two young girls, two disorders, and the race for two cures.

A Santa Barbara girl with a rare developmental disorder and her friend with a life-threatening genetic disorder are the motivation for Chris Kolendrianos to complete his goal of running a 50-mile endurance race.

Even so, when the runner toes the line this month for the Avalon Benefit 50 Mile Run on Catalina Island, a victory will bring more than a completion medal.

Kolendrianos is running to aid Rett syndrome and CDKL5 research.

“I’m trying to raise awareness for two lovely ladies,” Kolendrianos told Noozhawk. “I started running because of Sorel. She can’t walk or run, and I’m her legs. I do it for her, until she can — hopefully, one day. She gets me through the rough patches.”

When Kolendrianos and his wife, Megan, brought their newborn daughter, Sorel, home from the hospital, all seemed normal for the family.

“She was a perfect baby and always happy,” he said. “But we knew something was different.”

Sorel could speak 15 words, then she stopped talking. She didn’t reach childhood development milestones, such as learning how to crawl.

At about 17 months old, Sorel’s muscle tone also appeared to be flimsy, which led to a blood test confirming the presence of Rett syndrome — which occurs worldwide in one of every 10,000 female births, according to the International Rett Syndrome Foundation.

In some cases, a blood test itself is not enough for the diagnosis, Kolendrianos said.

Chris Kolendrianos is raising awareness about Rett Syndrome, a neurodevelopmental disorder that afflicts his daughter. “She can’t walk or run, and I’m her legs. I do it for her, until she can — hopefully, one day,” he says. Click to view larger
Chris Kolendrianos is raising awareness about Rett Syndrome, a neurodevelopmental disorder that afflicts his daughter. “She can’t walk or run, and I’m her legs. I do it for her, until she can — hopefully, one day,” he says. (Kolendrianos family photo)

The neurodevelopmental disorder affects girls, but can rarely develop in boys, and is characterized by normal early growth, followed by a slowing development, according to the National Organization for Rare Disorders.

Sorel’s condition — also known as R525X — affects her ability to walk, speak, and use her hands.

An eye gaze tracking and pupil control technology helps her communicate.

“She doesn’t have any motor skills, but she is cognitive,” Kolendrianos said. “She understands everything and is smart.”

The Isla Vista School student is dependent on a feeding tube and will receive surgery in February because of scoliosis.

“She can luckily still eat, and we are happy about that,” Kolendrianos said.

He said a child with Rett syndrome is born every eight hours worldwide.

“Even though she’s the only girl in Santa Barbara — that we know of — it’s more common than we think,” he added.

Sorel enjoys activities that most young girls like, and just got her nails done with her best friend, Bella.

Haley Ward, 8, left, and Sorel Kolendrianos, 11. Click to view larger
Haley Ward, 8, left, and Sorel Kolendrianos, 11. (Ward family photo)

Support from Sorel’s younger brother, Xander, helps manage symptoms. Sorel is now 11 and still battles seizures.

“He’s a big helper and calm, even when she has seizures,” Kolendrianos said of Xander. “He’s amazing. He talks for her.”

There’s no cure, but treatments are directed toward symptoms, according to the National Institute of Neurological Disorders and Stroke.

Kolendrianos will also run in honor of Sorel’s friend, Haley Ward, who has been diagnosed with CDKL5.

CDKL5 disorder is considered as an independent entity and initially was described as an early onset seizure variant of Rett syndrome, according to the U.S. National Library of Medicine.

The disorder can cause a lack of muscle control, scoliosis, dislocations from lack of weight on joints, cardiac issues, developmental delays and require the use of a feeding tube.

Haley, who lives in Newport, N.C., was 9 weeks old when her seizures began. She once had 35 in a single day.

Her mother, Sherena Ward, was devastated that her daughter would not lead the life she had dreamed for her.

“Waking up to a child screaming having a seizure is the most frightening way to wake up,” Ward said.

“All children require round the clock care, but a child with special needs most certainly has to be monitored closely, and we as parents sleep lightly.”

She said the family has tried many different medications but they never brought complete seizure control, and the side effects were awful.

Haley now has seizures once or twice a week, and other methods — including steroid injections and a vagus nerve stimulation device — failed to help, Ward said.

Cannabis oil has helped Haley gain seizure control, and she has now gone four months without a seizure, her longest stretch yet.

Ward said a child with CDKL5 will have more than 20,000 seizures by the time they’ve reached the age of 7.

Haley has in-home nurses a few days a week to help her mother care for her daily needs. A specially trained seizure alert dog assists with the detection of the events as they approach.

In 2014, Kolendrianos met the Ward family at a CDKL5/Rett syndrome conference in Virginia and they became Facebook friends.

“He has a lot of compassion for these children and is more determined than many people I know to raise awareness to these rare disorders,” Ward said.

“It’s very honorable of him to run for these girls, so they may one day run themselves.”

The Avalon 50/50 Benefit Run on Catalina Island will take place Jan. 7, following a course that takes runners from Avalon Green Pier through the island’s interior before finishing back in Avalon.

The Kolendrianos family has asked that donations be made to this Rett Syndrome nonprofit organization in Sorel’s honor.

Click here to make an online donation for CDKL5. Donors can note that the contribution is in honor of Haley Ward.

Click here for more information about the Avalon 50/50 Benefit Run.

Noozhawk staff writer Brooke Holland 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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