In early 2015, Grayson was born with a rare seizure disorder called Dravet Syndrome. It is reported to affect 1 in every 15,700 people. Common issues associated with this lifelong, incurable epilepsy include prolonged seizures, developmental delays, and orthopedic conditions, just to name a few.
However, despite his grim prognosis, Grayson was thriving. He was walking, smiling, and communicating with sign language, and—most importantly—he was happy. His do-it-all mother, Jordan, balanced work and home life to give both of her children a wonderful environment to grow up in. Grayson's older sister, Mikayla, absolutely adored her little brother and cherished the time they spent playing together. Grayson and his family were making the best of what life had to give them.
Unfortunately, everything at home wasn't exactly ideal. Almost weekly, Grayson would suffer a two- to three-hour grand mal seizure, which are the kind of violent, muscle contracting episodes most people imagine when they hear the word "seizure." Sadly, each time it occurred it would send Grayson on an emergency trip to the hospital. Once there, he would receive immediate care and be brought back to stable condition every time.
Every time until October 11, 2017.
Jordan told us she had found her son experiencing yet another grand mal seizure. So, as she'd always done in the past, she had Grayson rushed to a nearby emergency department via ambulance. At the hospital, Jordan recalls, in addition to some breathing treatments, Grayson was given a loading dose of Valproic Acid, which is a medicine commonly used to treat seizure disorders. According to records, this dose proved to be a toxic amount for Grayson's small frame and, ultimately, is believed to have played a role in his sudden liver failure.
"When your liver fails, it causes your ammonia levels to rise because [the liver] is no longer processing them the way it's supposed to," Jordan says of her son's injury. "Because he went from fine to late-stage liver failure in less than six hours, the [toxic] ammonia levels resulted in irreversible brain damage."
When Grayson woke up from a medically induced coma, the metabolic brain injury he’d sustained had changed him.
"All of the white matter on his brain [was] damaged. We spent five weeks in the PICU and two weeks in a rehab center. And when all was said and done, I took home a version of my son," Jordan painfully explained to us. "He no longer walks, or talks. He has no tone, can barely hold his head up, and cannot sit. He has severe dysphagia and had a g-tube, which he is entirely dependent on for nutrition.”
In addition to also having cortical visual impairment and auditory impairment, Jordan adds: "Also...my son no longer smiles."
We felt broken at the thought of a child who can no longer express happiness, but thankfully, there's light ahead. Grayson's mother has been working tirelessly to rehabilitate her son back to full health through weekly physical, occupational, visual, and speech therapies, along with expensive, out-of-pocket treatments like hyperbaric and stem cell therapy.
Jordan asked Holton's Heroes if we could provide one of two specialized chairs she was considering for Grayson. Thanks to our wonderful donors, we were able to purchase both chairs—the Firefly Goto Seat and the Childrite Therapy Chair! We also provided Grayson with a special Hensinger Head Support system that will help him keep his head upright, and we made sure to include Grayson's sister as well, presenting her with a bunch of new art supplies, as their mother told us Mikayla is very creative.
Jordan recently posted on her son's Facebook page, Grayson's Journey with Dravet, that a month after Grayson received his first stem cell injection—now three injections and around 100 million stem cells in total—"he is sitting unsupported in his Childrite seat holding his head up....AND, tracking me. Neither one of these things he did a month ago."
You can check out the video below for yourself.