VIRGINIA BEACH, Va. (WAVY) – How far would you go to save your child’s life?
A Virginia Beach mom is back fighting for what she thinks is the only treatment keeping her son alive.
Kathy Hartman wanted Virginia Beach doctors to give her son Kaden an experimental treatment for a rare and deadly disease nearly five years ago.
They would not do it, but doctor’s at Children’s Hospital of Richmond heard about the story and took on his case there.
For two years they’ve been making the drive every two weeks.
Two days ago, Kathy says doctors pulled Kaden off the trial, and she is once again fighting for his life.
“Kaden should not be here, for him to still be here, still be walking, still be talking, still be running around, playing video games, eating, swallowing, it just it doesn’t get any better than that,” Kathy told WAVY.com
Kaden has a rare, fatal disease called Niemann Pick Type C. Most kids with it don’t live past the age of 13.
He’ll be 14 in April. Kathy said, “He’s had absolutely no decline, the medicine has done wonders.”
The medication is Cyclodextrin. 10 On Your Side traveled with the Hartmans to Richmond in 2015 for one of his experimental treatments.
“If he’s off of it, he will die, and as a mom, I’m trying to do the best thing for my son.”
Right now, Kathy believes the best thing includes an herbal supplement called CBD. She says it helps control seizures that have led to serious injuries, including two skull fractures and a broken tooth.
“Hit my tooth on the bathtub faucet,” Kaden said as she pointed to his mouth.
Kathy says the cannabis oil cuts down on the number of seizures, but his doctors don’t want it.
She showed us a letter from Virginia Commonwealth University, which states, “Use of non-FDA approved medications, such as CBD, would result in termination of the study because the risks have not been evaluated.”
Kathy argues they have because children in the same study in other states are taking the cannabis oil.
10 On Your Side reached out to VCU, and despite interviewing with us about Kaden in the past, a spokesperson told said on Monday that they were unable to comment due to patient privacy.
VCU had no explanation on what changed for them.
Meantime, Kaden hasn’t changed a bit and he wants to continue on the medicine that’s likely made that possible, telling WAVY.com, “You know why because I don’t want to die.”
Kaden was due for another treatment next Monday.