HOUSTON – Three families from across the world are converging on Houston at a lab where a doctor is trying to cure a rare disorder called KCNQ2.
It causes epilepsy, intellectual disability and autism. On Thursday, Local 2 was there with the families as they met and swapped stories about their children battling this very new disease.
"She has a mutation with her KCNQ2 gene," said Dr. Edward Cooper, with the Baylor College of Medicine.
He considers this uncommon -- not rare -- because he suspects there are thousands of cases out there. But right now, there are only 90 that he knows about.
"There are many out there, in every city, including in Houston," Dr. Cooper said.
Jack, a 5-year-old from Wheaton, Illinois, is also in a worldwide study, part of which is taking place inside a lab at the Baylor College of Medicine in the Texas Medical Center.
The families of Jack and another patient, Harper, connected through social media. Harper's mom went online and found a foundation started by Jack's family, then found a news story from 10,000 miles away in Australia.
That story was about 9-year-old Jacqui, who is the daughter of NBC News correspondent Sara James.
"She and Harper and Jack's parents are all in Houston this week to meet each other, as well as meet one of the key neuroscientists in the study -- Dr Cooper.
The foundation that Jack's family started is helping to fund Dr. Cooper's lab work. He is also working with Jacqui's doctor in Australia.
"Two years ago we really didn't have any evidence what causes the difficulties in development and seizures that Jack and Harper and Jacqui have experienced. I can say we've made enormous progress in that time," said Dr. Cooper.
To the families, the work these doctors are doing to find a treatment is priceless.
If the disorder sounds familiar, your child can be tested with a simple blood test. To learn more you can visit, JacksArmy.org.