by Molly Forsythe.
In 2008 I got really sick. I was dizzy, nauseous, unable to care for my three beautiful children. I was so sick I could not walk a block without feeling like I would pass out. After many years of doing research, going to one doctor after another, I was finally diagnosed with a rare disease, Addison’s disease in 2010. Today I ran 31.1 miles in honor of rare diseases and an amazing little boy: Braden Peiffer. He suffers from his own rare disease: Landau-Kleffner Syndrome. I feel that it’s my duty to pay it forward to people who are still suffering, people like Braden. I ran 31.1 miles with my two very good friends Darcy Lawler (Braden’s Aunt) and Amanda Collins. We ran the entire Chicago Lake Front and ended at Buckingham Fountain.
We ran this race along with our husbands, friends and family. They supported us all 31.1 miles just as they have supported me throughout my illness. Without these people, I could have never gotten better or accomplished this run. Without people advocating for rare diseases, people like Braden will not get better. We need the foundations that support and research rare diseases or there will be no cure. On May 11, 2013, I ran 31.1 miles for Braden Peiffer and Landau-Kleffner Syndrome. And I ran my heart out!
When Braden was 15 months old, I knew there was some sort of issue. He wasn’t speaking words or using gestures, and he was such a picky eater. He started an early intervention program where he received speech therapy, occupational therapy, physical therapy, developmental therapy, vision therapy and eating therapy. We saw many specialists throughout the years, and he received many diagnoses (receptive and expressive language disorder, apraxia, hypotonia, absence seizures, ocular dysfunction and sensory integration disorder), but no one seemed to understand what was going on with Braden.
At about age two, he seemed to have trouble with eye contact and language seemed to become more difficult. He seemed less social; however, he didn’t quite fit the diagnosis of an autism spectrum disorder. We decided to get an EEG to rule out epilepsy. As it turned out, it provided us with the answer we were looking for. Braden was diagnosed with Landau-Kleffner Syndrome (LKS), a rare seizure disorder that damages the language center of the brain when he was five. Because LKS is so rare, his first neurologist misdiagnosed him as having epilepsy. It was an epileptologist, a neurologist that specializes in epilepsy, that recognized he had LKS. He then stated to take the correct medication to stop the brain from being further damaged.
It has been five years since he was diagnosed with LKS. Although he has gotten much better, his brain still needs to repair itself. He still receives lots of speech therapy to relearn lost language, physical therapy and occupational therapy. He still has difficulty having a conversation, making friends and writing, although he has made great gains in this area. He also has ADHD from the seizure activity damaging the frontal lobe of his brain. The goal is to stop the seizure activity so that the brain can completely repair itself. I am hopeful that this will happen. Even though having a child with a rare disorder is difficult, I wouldn’t change it. I feel so fortunate to have such a close and special bond with my child.