HOMER, N.Y. – Heidi Harman first noticed something was off with her son, Kaleb, about a year ago, when he began making involuntary movements. She documented the incident and decided to call her son’s doctor to find some answers.
“He started doing some involuntary movements and I had gotten a video of it,” Harman said. “Even with the video, I still had to fight with the doctor’s office to see a neurologist.”
Since that day, Heidi and Lester Harman, of Homer, have been to doctors and specialists across New York State in search for answers for their two-year-old’s condition.
“It’s been a rollercoaster,” Harman said. “We’ve been to every doctor.”
The couple eventually learned that Kaleb has a rare neurological condition known as Chiari Malformation, which is an abnormality at the back of the brain and skull. Due to his condition, Kaleb suffers from frequent headaches, developmental delays, and sensory processing issues. He also has difficulty chewing food and going to the bathroom.
While he is nearly 3 years old, Kaleb’s speech is similar to that of a 1-year-old, his mother said.
“These kids need help. This isn’t fair to them,” Harman said. “They shouldn’t have to live with pain. There’s no help out there for kids in Cortland with rare diseases.”
On Jan. 2, Kaleb underwent compression surgery, where they shaved down part of his skull and vertebrae. He is now undergoing physical therapy. The family has also reached out to Golisano Children’s Hospital in Syracuse to find support.
The Harmans have created a Facebook page titled “Kaleb’s Journey” in an effort to raise awareness of his condition and to help solicit support from community members. They have also set up a donation page.
Harman said people should also consider donating to a charity for kids with Chiari Malformation, such as the Chiari & Syringomyelia Foundation.