‘Anti-NMDA’ robs Jenny Nichols of mind, body
“My daughter, Jenny Nichols, a 2005 graduate of Rockford High School is suffering from a very rare illness and, as of today, she is in her 45th consecutive day under constant medical care at Methodist Hospital in St. Louis Park.”
This is the first line of an email that came into the newsroom earlier this week. As the reporter read a little further, it was easy to see that this was compelling and heartbreaking at the same time, and which not only involved a young woman with roots in the community, but the family that stands at her bedside hours upon hours, every chance they can, waiting for any sign of improvement. And, they count each blessing as it arrives. Or, maybe “celebrates” is more accurate.
Brian Nichols, Jenny’s father, explained said the recent events involving his daughter’s illness took everyone, including Jenny, by complete surprise. A life-long athlete who excelled in volleyball, soccer and basketball —and who would go on to coach at schools in Minnesota — Jenny has always been the picture of health. All that changed drastically, and devastatingly, on March 27 when she was discovered outside of Ridgehaven Mall in Minnetonka unconscious. Her parents were notified as she was brought to the hospital by ambulance, and were told it was probably a seizure brought on by the onset of epilepsy. Alarmed and concerned for their daughter, Brian Nichols says that at least there was a diagnosis they could understand and treatment available for it. But after being released, Jenny experienced more seizures and other troubling signs that something else was wrong. Nichols recounts how he and his family, wife Barb and younger daughter Michelle, along with Jenny’s boyfriend John, watched as Jenny spiraled down quickly loosing motor skills and the ability to communicate as well as experiencing more seizures and hallucinations.
It was more difficult, said Nichols, to watch than anything he could have ever imagined, but so much worse for Jenny who remained aware of everything that was going on without any ability to change, or stop, the condition. Jenny was admitted to Methodist Hospital again April 5, where she remains today. Her illness, extremely rare, now has a name.
Jenny is suffering from “Anti-NMDA receptor encephalitis.” It’s estimated that less than 1,500 patients in the world have suffered from the illness since it was identified in 2007. In laymen’s terms, there are cells in her body that are creating anti-bodies that are attacking the nerve endings in her brain. Jenny has suffered dozens, if not hundreds, of seizures as well as hallucinations, confusion and catatonia, and has lost almost 100% control of her mind and body. She currently is unable to function without constant 24-hour assistance. What’s also important to note is that NMDA is caused by something else, statistically the early stages of ovarian cancer but, in Jenny’s case, it’s happening at the molecular level making it difficult, if not impossible, to identify. The cause of Jenny’s NMDA has yet to be determined.
Talking to Jenny’s father, it’s very clear that this sudden change in circumstances has become the focus of he and his family’s lives. Every little milestone, every communication or physical improvement, no matter how slight, he can recount with numerical day of her stay. The day she took a walk outside. The day she told him she wanted to go home, and listened as he told her what lies in store for her recovery and she responded with a thumbs up. The day someone commented on her hair and replied, “My sister did it on Friday.” Just one sentence, a few words strung together, but it was another first and celebrated, Nichols said, the way you would a child’s first word.
Jenny is Rockford graduate who went on to graduate from Hamline University with a degree in exercise science. She works at the Barnes and Noble store near where she was found in March, and has aspirations of returning to school to complete the courses she would need to teach math.
The outpouring of support from the community has been heartwarming, said Nichols. A former Rockford High soccer coach, he never realized until Jenny’s illness how deep his family’s ties were in the community. Meals have been provided, and Jenny’s Caring Bridge site (www.caringbridge.org/visit/jennifernichols) has nearly 8,000 hits as well as some very supportive and moving messages.
A benefit has been planned for Jenny’s current and future medical costs, and will be hosted by her sister, otherwise known as “Moe” and John Rosenberger. The benefit will take place on Saturday, June 1, from 4 to 8 p.m. at the Rockford Elementary School. There will be food, entertainment and a silent auction. For more information on this event, go to www.welovejenny.com
Jenny’s cognitive functions remain good and this is excellent news amid the trauma she’s suffered. Motor skills can be relearned through time and work, but the loss of cognitive skills is more complex as is the recovery of them.
According to her father, this young woman has a lot of work ahead of her, but is on her way to better days. He recalls a walk she took outside for the first time during her long hospital stay. He athletic ability was tested at what he estimates was about a half mile — something that wouldn’t even register as exercise before the illness struck — but so was her ability to think things out. Once back at the hospital her father said her legs were trembling and staff tried offering her a wheelchair. Jenny declined, and staff (familiar with the “girl from the sixth floor”) didn’t push although it was obvious she was just hanging on. And, hang on she did. She made her way into the elevator, up to her floor, and all the way to her bed where she collapsed into well-deserved slumber. Her father credits her athletic ability, but it’s obvious in his telling of this outing that he also sees a smart and determined young woman pushing the limits of her circumstances in an effort to get to recovery.