Sorel suffers from Rett syndrome, a rare genetic disorder of the nervous system that is caused by mutations of the X chromosome. The disorder appears almost exclusively in girls and leads to developmental reversals, especially in the areas of expressive language and hand use. In addition to a loss of motor skills, Rett syndrome can cause breathing and cardiac irregularities, seizures, digestive problems, scoliosis and tremors.
Sorel was diagnosed with Rett syndrome in 2007, when she was about a year old.
“After receiving (Sorel’s diagnosis) it seemed only right to run in her honor and raise funds for research,” Kolendrianos said.
As Kolendrianos — a married mother of two — prepares for her fourth marathon, she is experiencing a number of emotions.
“I have days where I can run 15 (miles) and feel like I can keep going, and then there are those days I go out and run five and feel terrible,” she told Noozhawk.
“I relate those days to my daughter and how hard she works with her slew of therapies — in and out of school — to maintain the skills she has. She is a true inspiration; there is not a moment running I don’t think of her.”
Advances in Rett syndrome have been made. While he was at Children’s Hospital Boston, Dr. Omar Khwaja developed the first disease-modifying therapy being tested on girls with Rett syndrome.
“This trial is giving families enormous hope for a brighter future,” Kolendrianos said.
The trials occurring in Boston could potentially effect the Rett Syndrome symptoms that Sorel endures and lead to “a much better and healthier life,” said her mom, who is also fundraising for the cause through Crowdrise.
“I imagine a day where I don’t have to have a monitor next to my bed, to not worry about a seizure or a breathing issue, to watch my daughter rise on her own, put her running shoes on, and run along side of me,” she said.
For Kolendrianos, Sorel was her main motivation for fundraising and running the Boston Marathon on April 18.
“I run for my daughter because she can’t and because someday she will,” she said.
Kolendrianos will be running the marathon with her friend, Jenny Schatzle, a Santa Barbara personal trainer who is also raising funds for Rett syndrome research.
Click here to make an online donation through Crowdrise.