Jaden’s Journey: The Story
Jaden Glover, along with his parents Brooke and Jon, have been on a journey laced with heartbreak but filled with laughter. Jaden is just 6-years-old and is one of only 12 people in the world with an extremely rare syndrome that affects his brain, eyes and skin.Brooke and Jon say their son’s medical condition is very unique but its not what makes him special.A game of catch between Jaden and his dad is a celebrated event. A quiet moment with mom is treasured.
Jaden Glover was born February 11, 2004. He appeared to be a healthy, happy baby boy, cherished by his young parents.“He is kind of one of a kind,” Jon said.At 3-months-old Jaden started to turn blue and his parents rushed him to the hospital, not knowing their lives would be very different when they came home.“They hooked him up to all there machines and said he is having seizures,” Brooke said.Jaden is one of 12 people in the world with Oculo-Ectodermal Syndrome. It affects his eyes, skin and brain. He also has very severe epilepsy he is the only person ever diagnosed with both conditions.
Then last September jaden and his parents took another life changing trip to the emergency room. Jaden was having so many seizures he was lethargic and doctors started asking questions no parent wants to think about answering.“We weren’t prepared … they just kind of nonchalantly say have you thought about DNR (Do Not Resucitate), right are you kidding me this is our child,” Jon said.Doctors thought Jaden’s brain was continuously seizing. To give his brain a break they wanted to stop him from breathing on his own and put him in a medically induced coma.
No one was sure was sure he would ever wake up.“You know I don’t know anything but to fight for his life I don’t know anything else but to do that,” Jon said.He begged the doctors to do one more EEG to test Jaden’s brain function. That test looked like every other EEG Jaden had in his life, the results proving that Jon and Brooke weren’t in the fight alone, that Jaden was fighting too. And it’s Jaden’s fight Jon and Brooke won’t give up on.“I lose it when we start talking about stuff like that,” Jon said.Generally a person with epilepsy considers it a bad year if they have six seizures. For Jaden it’s a good day if he only has 20 seizures in that one day.On a bad day he has close to 100.
“Jaden is the strongest person I know,” Brooke said.Since that trip to the ER last September, Jon and Brooke have decided to take care of him at home. As much as their small house is bursting at the seams with love and courage, it’s also over flowing with medicine, feeding tubes, monitors and wheelchairs.
The trio live upstairs in the same bedroom in the same bed and they have to carry Jaden and all his medical equipment up the stairs.Jon and Brooke are fighting like any parent would to keep their son alive and give him the life he deserves but their house is not set up to raise a disabled child.All Brooke wants for her son is to be “able to get a fair shot at learning and development and just being happy and having his life back and not being taken away by seizures.”“There is no more seizure drugs to try, no brain surgery, the VNS didn’t work and now we are down to our last option and its putting things in perspective,” Jon said.Their obstacles are obvious, their fight is desperate and their fears unimaginable“The geneticist we saw recently literally told us you are probably going to out live your son, how do you respond to something like that?” Jon said.They are responding the same way Jaden has responded to obstacles his entire life. With laughter, and a strength and resiliency that only a child as unique as Jaden can possess.“We have to be as strong as we can for him we continued to be inspired by him,” Brooke said.Jaden’s parents say right now their focus is on Jaden but eventually they want to help other people with illness like his. They say they keep detailed journals, so doctors can learn more about his rare condition.
The KXLY4 Extreme Team is going to renovate their home to fit Jaden’s needs. The project will kick off in a couple weeks, but in the meantime if you want to help, you can join the Extreme Team fan page on Facebook or you can listen to Dave, Ken and Molly on 92.9 ZZU weekdays from 5 to 10. Dave, Ken and Molly will be taking donations for Jaden as well.