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Family of Girl with Rett Syndrome Hoping for Cure

Santa Barbara's Sorel Kolendrianos and her parents are raising awareness about the need for research, and your online vote can help

Sorel Kolendrianos, 4, laughs with her father, Chris. Sorel was diagnosed in 2007 with Rett syndrome, a rare developmental disorder that affects her ability to walk, talk and use her hands.
Sorel Kolendrianos, 4, laughs with her father, Chris. Sorel was diagnosed in 2007 with Rett syndrome, a rare developmental disorder that affects her ability to walk, talk and use her hands.  (Kolendrianos family photo)

Four-year-old Sorel Kolendrianos may be the only little girl in Santa Barbara struggling with Rett syndrome, but she’s not alone as supporters speak up through the nationwide Pepsi Refresh Project, an online grant program in which the Research to Reality Campaign is in the running for $250,000.

In 2007, Sorel was diagnosed with Rett syndrome, a rare developmental disorder that robbed her of her ability to walk, talk and use her hands in a purposeful way. She developed normally until she was about 18 months old, then she lost it all.

“We were heartbroken,” said Sorel’s mother, Megan Kolendrianos. “Thoughts of ballet, soccer, everything was erased. I work in the wedding industry. It’s hard sometimes to think Sorel won’t have that. Now we are beyond that heartbreak. We are close to her third-year diagnosis day.

“Sorel is such an extraordinary little girl. She is the most amazing thing in our whole lives. She is what we wake up for and fall asleep thinking about.”

Sorel will begin kindergarten in the fall at Isla Vista School. She currently spends two hours each day in an inclusion program with typically functioning 3- to 5-year-olds at the Orfalea Family Children’s Center at UCSB.

“It amazes me that although Sorel does not have words, she speaks to these kids with her amazing smile and laughter,” her mom said. “They actually fight over who gets to hold her hand in music class or sit next to her in group time.”

Now juggling another baby, Xander, the Kolendrianoses can use all the support they can get.

They have found a network of support through the International Rett Syndrome Foundation, a nonprofit organization that funds research and provides resources for families. Two weeks ago, Megan Kolendrianos and her husband, Chris, attended an annual family conference in Colorado Springs, Colo., hosted by IRSF.

“It’s like going to normal island,” Chris Kolendrianos said. “It feels like family. They totally understand what we are going through. They know how hard it is.”

Throughout June, people from Santa Barbara and all over the nation can show their support through an easy online voting campaign sponsored by PepsiCo. Each month, the Pepsi Refresh Project will award grants, totaling $1.3 million, for innovative and inspiring ideas that win the most votes. The top two vote-getters receive $250,000. Anyone can vote online once a day for the IRSF, which currently ranks No. 14. Voting ends June 30.

“Each vote is one closer to getting the grant,” Chris Kolendrianos said. “The time is now. The research is promising.”

In the past 10 years, researchers have found a way to effectively reproduce the disease in animal test subjects and demonstrate the potential reversibility of the disease. Now, researchers need to find a way to translate that to the thousands of “silent angels” waiting for a cure.

“Even if we don’t win, we want to raise awareness,” Chris Kolendrianos said. “My dad was a pediatrician for 30 years, and he never saw this syndrome before. For a long time it’s been misdiagnosed.”

The Kolendrianoses have received support from the community, too.

Chris Kolendrianos works as a graphic designer at KARL STORZ, an international company that makes and sells medical instruments. He approached his company with the need for Rett syndrome research to find a cure for his little girl.

“I’ll do whatever it takes,” he said. “I’m not afraid to approach people.”

Last year, KARL STORZ donated two scientific grade microscopes, called MicroFires, to two leading research labs. This year, it will donate eight microscopes — two MicroFires and six QuantiFires — to the International Rett Syndrome Foundation. This is no small contribution, as each microscope ranges in the thousands of dollars.

You can help, too. It’s as easy as pressing a button. Click here to vote. To follow Sorel’s story, click here to read Megan Kolendrianos’ blog.

Noozhawk intern Andrea Ellickson, a UCSB graduate, is a journalism student at SBCC. She can be reached at .(JavaScript must be enabled to view this email address).

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