MOGAD ADEM Camden Courage

First off, this is extremely hard to admit let alone process because we are normally prideful people who take care of others. Our family suffered an unexpected experience recently that has led us to admit that life is starting to get overwhelming. It first began in September when our son came down with a common cold leading to his normal barking cough. This is typical for the Fall time; however, not long after he began to experience headaches that caused him so much pain that he was unable to go to school for a month and half. We took him his primary care that led us to being sent for blood test that came back normal besides his white blood cell count being elevated showing he had an infection recently. His headaches continued so we took him to the urgent care with the response to take him to the hospital. With options running out we took him to the nearest hospital who did not have a Pediatric Neurologist so they had to communicate with another hospital for guidance. After receiving the first MRI; it was clear he needed to be transferred to another hospital in order to determine what he had. His MRI showed multiple lesions on his frontal lobe. Transferring was difficult due to no beds available during a RSV spike, but luckily UMMC called with a special accomodation for him so he was transferred. He spent a week of getting blood test, 3 strong antibiotics for meningitis, IVIG infusions, spinal tap, and a MRI. He continued to improve, but it was found that his test were all negative for meningitis, Lymphoma, Lymes, mono, and others. The only answers we received was that he had an infection that his immune system went into overdrive with. After a week and half discharged he started his headaches again. This time his condition got worse beginning with challenges with walking and talking. We decided to go straight to Johns Hopkins desperate for answers. Within 24 hours of testing (MRI, bloodwork, EEG, and spinal tap) he was determined to have ADEM (Acute Disseminating Encephalomyelitis). He was treated with 5 days of IV steroids and sent home with a taper. Less than a month after finishing his taper he began having migraines again so his neurologist advised to come back to the hospital for another MRI. He was taken back to find that he had a relapse showing a new lesion on the back left cerebellum causing decreased motor responses to his left side. We were advised his MOG antibody testing came back highly positive so now that he has relapsed and with the additional information his diagnosis is MOGAD (Myelin oligodendrocyte glycoprotein antibody-associated disease) with ADEM flare ups. This was supposed to be a one time event with a 30% chance of relapse. Since Camden relapsed he requires long term treatment of IVIG infusions from home. This is an extremely rare condition that only 1.6 in 1 million have. Not much is known on the cause, but Camden is signed up to be involved in clinical research when he goes for his appointments to help science grow. We received a call advising us that he does not qualify for copay assistance from the manufacturer of the IVIG because of his diagnosis. I can only assume that they find it experimental, but our concern is what is necessary to help our son prevent further attacks. In the past few months we have watched our energetic, happy son experience unbelievable challenges and fight through them. We have been lucky to have a strong support system, but I am afraid that we need more help as this expense is changing his life in the most drastic way. Words cannot express the gratitude for those who have provided assistance already through this challenging time. Please know it does not go unnoticed. As much as we want to be prideful; this is about supporting Camden. We want to help raise awareness of this condition and help educate the challenges that we have faced in getting the necessary care to prevent further attacks! Please listen to your children and hold them close!

Thank you all and Love you! From the Pack-Witmer Family

#CamdenCourage