Raising money for medical treatment

Hi, my name is Kysha Rodgers, I used to be an active single mom, with a great home and a promising career. All of that changed on February 21, 2020. The beginnings of my severe health issues started with a terrible migraine, a painful swollen right eye, and excruciating pain. Immediately rushed to the ER, I knew something was terribly wrong. I was seen by a neurologist, went through numerous tests and two attempts for lumbar puncture (spinal tap). Originally the doctors thought it was uveitis and admitted me in the hospital for treatment of steroids and antibiotics to decrease the swelling and inflammation. After being admitted for a week, I was instructed to continue the treatment for the next couple of weeks, my condition was supposed to improve. The symptoms continued on for weeks. I decided to go to John Hopkins in an effort to seek help in identifying the cause of my illness. Again I was admitted, they ran numerous tests, including more lumbar punctures to test for autoimmune diseases. The test results revealed that I had a rare autoimmune disease called Vogt-Koyanagi-Hamada(VKH). VKH is an ocular uveitis disease which causes extreme eye pain and inflammation behind the retina, severe migraines, vertigo, inner ear fluid and swelling, to include affecting skin pigmentation and the Central Nervous System. My family and I were relieved to finally have some answers. We were hopeful that the correct treatment would help to suppress VKH, but I began having seizures a few months into treatment. I was admitted to the hospital yet again. None of the specialists could explain why or how the seizures started. While in the hospital, I lost my ability to walk and became bed ridden. A couple of days after that, I started having trouble talking and communicating. When I could manage to speak, my voice was not my own. After a week in the hospital, the specialists recommended that I go to a rehabilitation center. I spent two months in the rehab center during the height of Covid; I was unable to have visitors, which meant I could not see my son or family for the entire stay. My depression was at an all time high, but I continued to do the work to try to get my life back. I went through physical, occupational and speech therapy. I had to learn how to walk, complete simple tasks that we all take for granted and talk. My voice changed and I was diagnosed with Foreign Accent Syndrome (FAS) while in rehab. FAS is a speech disorder that causes a sudden change to speech so that a native speaker is perceived to speak with a “foreign” accent, it typically is caused by damage to the brain caused by a stroke, traumatic brain injury or an unusual consequence of structural neurological damage. This explained the difference and complications I was experiencing with my speech. The doctors had no answer as to what was causing all of these changes going on with my body. All of the symptoms that I was continuing to experience were not within the scope of VKH or FAS. After being released from rehab and reuniting with my son, I continued to advocate for myself to push for answers. I saw multiple neurologists and ophthalmologist. During a visit with the neurologist, I began to have multiple seizures along with temporary paralysis. I was again admitted into the hospital. After another round of testing and three attempts at another lumbar puncture it was determined that I had Functional Neurological Disorder(FND). FND affects the Central Nervous System, causing seizures, paralysis, sudden blackouts, severe migraines, extreme exhaustion, brain fog, memory loss, speech impairment, confusion, muscle weakness and extreme body and muscle pain. FND is a newly discovered disease, there are ways to suppress it, but there is no cure.

My life has forever changed since being diagnosed with VKH, FAS, and FND. My son’s foundation has been rocked to the core. My family has been severely affected as well. Most of my days are spent in bed being exhausted, suffering from extreme pain, dealing with multiple seizures and paralysis each day. I travel with a wheelchair and walker because I never know when a seizure or paralysis is going to happen. I’ve had multiple injuries caused by falls during the blackouts. The hospital visits and admissions are frequent along with MRI’s, lumbar punctures, and CT scans. My extreme health issues have made me completely dependent on my loved ones. I have to be under adult supervision 24x7, I can no longer drive or work. I’ve lost almost everything, my job, home, my independence, and ability to care for myself and my child. My son is suffering from anxiety and uncertainty because of all the drastic changes in his life. He’s only 7 years old; he stays up at night to watch me to try to keep me safe in case I have a seizure. He’s had to grow up so fast and stays alert in case he has to call for help. I was so proud of being a capable single mom and providing for my son, that pride has been shattered. I’m now unable to provide for my child or myself. I had to rely on my family to make Christmas a special day for my son. When my job let me go for being on short term disability for so long, my insurance coverage was dropped. I now have state provided insurance. Needless to say, with minimal insurance coverage my medical bills are thru the roof. It’s been extremely difficult to get the medical assistance that I require within the guidelines of what my insurance will cover.

During this difficult period of my life, I have continued to search for help and treatment. I want my life back! I’m determined to get my FND under control and get back on my feet. I recently found out that there may be hope. The founder of Fndcourage.org, Dr. Moenter, is a neurologist that is well educated with the symptoms of FND, a very rare find. Dr. Moenter is based in Colorado and offers seminars for FND patients as well as Telemedicine appointments for potential patients. Unfortunately, she does not except health insurance, all appointments must be paid out of pocket. In order for me to get treatment from her, I would have to travel to Colorado to go to her outpatient facility for 6 weeks with sessions at least 4 times a week. I’ll have to pay for lodging, transportation, food and other additional medical expenses. My son would have to travel with me. Due to my condition, I also require a caregiver for myself and my child. Afterwards, I will continue to have follow up telemedicine visits with Dr. Moenter for one year at a minimum. She has worked with many people throughout the US and they all praise her for helping them deal with or even overcome some of their symptoms. I know traveling to Colorado and seeking treatment is very expensive. I’m trying to hold on to a little sliver of hope and I want to get back on my feet to provide a better life for my son and I. Any donations would be extremely helpful and most appreciated. I need this help and support for my independence to take care of myself and my son. Thank you so much for your time and consideration, may God Bless you all.