A Santa Clarita family is seeking answers in a search to solve the mystery of their young daughter’s neurological disease.
Up until age 7, Kelsey Kling, who’s now 13, behaved as any other young girl, her mother, Priscilla, told The Signal this week. Although she had some developmental delays with walking, potty training and preschool, she was otherwise a happy, young child, Priscilla Kling said.
Then, in 2012, Kelsey had her first seizure. Doctors at first wondered if it was a sign of epilepsy. After more seizures, doctors saw that she had brain atrophy, which meant Kelsey’s brain was shrinking.
Fast forward to 2018, and Kelsey has lost the ability to walk, talk or feed herself. The Kling family has done multiple tests. “We’ve done genetic, spinal taps, MRIs, EEGs,” Priscilla Kling said — but as of now, no one has officially diagnosed her disease.
The Klings have gone to the Children’s Hospital Los Angeles, the Children’s Hospital of Orange County and the Mayo Clinic in Minnesota.
They have been involved with the medical team at UCLA since June 2017, with Kelsey undergoing genetic testing to find more answers.
The UCLA team is putting Kelsey in a clinical trial for undiagnosed neurological diseases, through which doctors are performing a Whole Genome Sequencing Test.
“They’re growing stem cells from me, my husband and Kelsey (over the course of a year) and breaking down every cell in her body trying to see if they can find anything wrong with her genetically,” Priscilla Kling said. “They feel it’s something genetic because they really can’t find any other reason why she’d be losing function. They’ve never seen anything like Kelsey’s case.”
Once the stem cells are thoroughly developed, they will be used to help Kelsey. Currently, doctors through CHLA are continuing to evaluate Kelsey and adjust her medications.
The Klings have a website at seizingkelsey.com where people can sign up for a newsletter or donate to Kelsey’s cause. A documentary called “Seizing Kelsey” is also in production.
“What we want is for everyone on social media to know and share Kelsey’s story,” Priscilla Kling said. “We’re trying to see if there’s somebody in the medical world who has diagnosed this and help us find answers.”
