Help Madi with the Gift of a Service Dog!

Hi there,

I'm Madi, a 21-year-old university student originally from North Carolina.

Since I was 11.5 months old I have lived with a rare and unusual case of epilepsy. At 11.5 months old I had my first febrile seizure, igniting the start of a life-long battle. As a toddler, I endured countless cluster seizures and emergency room visits and tried a never-ending list of medications to try to get my seizures under control. At one point I went toxic on my medication and spent more than a week in the pediatric intensive care unit. At four years old my seizures stopped, so my neurologist attempted to take me off my medication. Two years later just shy of being released seizure-free, I had my last grand-mal that nearly killed me. Since then I have been on medication that has controlled my seizures, but I still show seizure activity on all my EEG tests and therefore will live with this condition for the rest of my life.

When I was about 14 years old I experienced a very hard year littered in abuse and betrayal. At the end of the school year, I had lost all of my friends and I thought very terribly of myself; but the next autumn my family was supposed to move, so I was trying to be optimistic and look at it as a fresh start. That summer, at 15 years old I was once again abused. This incident caused me to think of myself as completely worthless and become morbidly depressed. For years, but especially the next several months following, I was continuously retraumatized, betrayed, and invalidated. For the next several years I suffered immensely from depression, anxiety, panic attacks, nightmares, numbness, and distrust.

Despite these obstacles, I managed to persevere and graduate from high school a semester early allowing myself to take a break to work and save money before going off to college. In August 2021, I moved to Sweden to pursue a degree in Human Rights at Malmö University.

Since moving to Sweden, I have had the opportunity to work as a babysitter and pet sitter as well as volunteer with the Doctors of the World interviewing patients and collecting testimonies that are used for advocacy. When I am not working, studying or volunteering, I love spending time on my own and with my friends, around the city as well as travelling and exploring other places. Additionally, I like to enjoy my downtime sewing, crocheting, reading, gardening, and/or binge-watching sitcoms.

Unfortunately, on May 4th of this year, my whole life was shattered to pieces after spending several days in and out of the emergency room, dismissed by the neurology office, suffering countless seizures, shedding many tears, and fearing for my life. My grandmother from the USA and boyfriend from France flew in overnight to help keep me safe and attempt to get medical care. Only after I had lost my ability to properly walk, talk, care for and advocate for myself, was I finally diagnosed with Psychogenic Non-epileptic Seizures or PNES.

PNES is a rare psychogenic (psychological & neurological) disorder, that manifests intense trauma, stress, anxiety, and/or depression into seizures and other physical symptoms. Most people with PNES, such as myself, endure a lot of medical trauma throughout the process of getting diagnosed, and even afterwards when trying to get proper help. Diagnoses of PNES can often be a long difficult process because so few understand and recognize the onset of the condition or the complex treatments needed for recovery. Recovery varies from person to person and full recovery and mobility is not always a likely outcome, even with the best care available.

I first went to the Emergency room on April 28th after calling my grandmother the night before in concern. I was already experiencing imposter syndrome before I was dismissed as an epileptic and was instead treated as a young woman with "anxiety." I was given an anti-anxiety pill and when the on-call neurologists saw me hours later, despite my seizures becoming more severe, I was told it was just stress, that the symptoms were self-induced, and that I just needed to relax. I was laughed at because of the spasms in my face and when I requested a doctor's note for university, I was told that it was impossible and that if the symptoms persisted for a week more they would be able to help me. I was sent home.

A friend took me back to the emergency room the next day because my seizures had grown more severe and I began to experience paralysis and nearly fainted. While at the emergency room, I had countless seizures, including one very serious one replicating that of a grand-mal. I had delayed help from the staff and was yelled at by the nurse for not responding to her when I was paralysed and non-verbal. Afterwards, the nurse came to tell me that she talked with the same neurologist who saw me the day prior and that he declined to see me again because it is just stress and anxiety. Terrified, shaking, and in tears while actively convulsing from seizures, I was once again sent home.

That night, both my grandmother and my boyfriend flew in to help support, care and advocate for me.

The next morning my boyfriend took me to the neurologist's office, where the staff denied me care, stating that they only work by appointment and that I needed to go to the emergency room. Together the two of us were causing a scene, violently seizing in the waiting room and my boyfriend raising his voice and insisting I be cared for. Eventually, a doctor agreed to see me and prescribed a medication knowing it may not help. Additionally, by my request, he also prescribed an epileptic emergency medication to help put me at ease, as well as providing a potential emergency medication (pill) for my current situation that would hopefully decrease my anxiety.

That evening, I endured a continuous stream of violent cluster seizures for three hours. The emergency pill I was given turned out to be valium. My grandmother was very hesitant to administer it because of my inability to swallow and my clenched jaw. I suffered so tremendously that my grandmother spilt a pill in half and was on the verge of administering it between my cheeks and gums and debating whether to call an ambulance. Fortunately, the seizures finally let up and neither were done I managed to eat and soon after fall asleep. The seizures were so aggressive that I lost my ability to properly walk and talk, and my speech did not come back until the next morning.

The next day the three of us returned to the neurologist's office. Once again I began seizing while my grandmother was requesting to speak with a physician and attempt to get care, and my boyfriend was making sure I remained safe during the seizure.

We were told that my assigned doctor was on vacation and would not be back until another week. Soon enough, my assigned doctor came to us while I was in the middle of a seizure- my eyes were rolled to the back of my head, arms hitting each other, legs slamming against the floor- and had the soulless audacity to say, "I am sorry, I cannot help her, we work only by appointment, there are no available beds, and she was seen in the emergency room over the weekend."

A couple across from us was in distress over the situation, the woman was crying and the man was pacing back and forth saying something to us about how broken the system is.

After much discussion, the doctor agreed to place a call to the in-patient neurology unit to see if I could be admitted. Not much longer after that a wheelchair came and I was wheeled into a room and carried onto a bed and stuck with an IV of anti-seizure medication. Soon after I was transferred to another bed, while seizing and was rushed to the in-patient neurology ward. (Where there were four other available beds in my room alone.) Countless doctors, nurses, technicians, assistants, etc. were over me as I was stuck with more needles and more fluids were being pumped into my body, while I was given bedpans and hooked up to EEGs while continuing through the violent seizures. Eventually, they finally scattered and let my grandmother and boyfriend back to see me.

The following morning I was diagnosed with PNES, and from that moment I began the first steps of recovery while I grieved the life I once had. I had lost my ability to perform simple tasks independently, such as using the bathroom or showering. I could barely walk or stand and I required a wheelchair when leaving the hospital, causing me to break down into tears on the way to the taxi.

PNES has drastically altered my life, causing immense suffering. In the beginning, I experienced frequent tears, outbursts of anger, and strained relationships with those around me. My body was covered in bruises, that were caused by the continuous striking against my arms, chest, and legs during the seizures, and I struggled to walk and climb stairs. Everyday activities, like dressing and maintaining personal hygiene were challenging. I was constantly fatigued, and I had to accept that my previous way of life would never come back.

Following my diagnosis, I had to resign from my weekend babysitting job as I can no longer lift the child, as well as my occasional babysitting gigs as my medical condition poses risks to both myself and the children. I have had to step away from volunteering at Doctors of the World as it poses too much mental and emotional weight for me, along with the volunteer times occurring so late at night. I have also had to leave my evening Swedish course and take an unofficial leave of absence from the university, with the hopes of returning to the University in a couple of weeks and my Swedish course in September. Fortunately, I have been able to keep my cat sitting and dog sitting jobs and will even start volunteering at the local cat shelter. I have even found spending time with animals to be a very therapeutic and calming activity, experiencing far fewer seizures when I am with the dogs and cats.

It has been nearly three months and I still struggle. I have nightmares from past traumas and experience flashbacks when seizing that cause me to feel like I am reliving the trauma over and over again. I have nightmares of seizures and can never know if the seizure is just a dream or is real or both. Some days I am really tired or depressed and don´t have it in me to do anything. I have a constant anxiety-like shaky feeling as a symptom of PNES and have regular anxiety related to the occurrence of my seizures, particularly when I am out and/or alone. I also experience a lot of anxiety around my healthcare and therapies widely due to the struggle I have endured getting diagnosed and getting proper treatments and therapies, as well as having to manage the trauma that has primarily caused this condition. I am currently working with a talk therapist who I have worked with for quite some time now while I wait to start working with a Cognitive Behavioral Therapy and PNES specialist. On my own time, I have been trying to help myself by reading books to better understand and improve my condition on my own. I have also started attending yoga classes several days a week as another method of helping myself mentally and emotionally.

Some days I can barely walk from my bed to my bathroom and every day I get stared at and given disgusting looks because of the way I walk. I rely on a crutch for support approximately 85% of the time and experience frequent falls. Additionally, I have lost quite a bit of strength in my arms and have forgotten how to run. As a means to improve my mobility, I am currently on a waitlist with a neurological physical therapist and I go to the gym regularly to work on my strength in relation to everyday tasks such as balance, walking more steadily, re-learning to run as well as progressing in my ability to climb stairs and move in various directions (backwards, forwards, sideways).

With the help of various safety measures, on July 1st I finally transitioned back to independent living. Prior to this, an application called SeizeAlarm was set up on my phone and Apple Watch to alert one of my neighbours or friends to come and help me when I have a seizure. My boyfriend also helped me re-arrange my room and "baby-proof" it with corner and edge protectors on furniture, foam floor mats, and blocking my bed in between a wall and a bookcase lined with pillows. This has helped create a seizure-safe place and prevent me from falling out of bed during daytime seizures, nightmares and rare night seizures.

While I have these numerous safety measures in place and they do allow me to live much more independently and safely, I still have a great number of limitations. My independence only extends so far, I cannot travel further than within my own city by myself and neither can I travel too late in the evening or early in the morning, especially on my own. When I am home my safety is limited to my watch detecting a physical seizure and alerting someone or me being able to press the help request button if I have for some reason taken it off, as well as someone being home and able to come and help me and help me in time. When I am out my safety is limited to both my capability to not only find help, but also to whether or not that person knows how to help me.

With this in mind, my family and I have been discussing the possibility of a service dog which could greatly assist me with my safety as well as my independence. We have recently come into contact with a wonderful woman with the local DISA organization here in Sweden. She, my family, and I have talked together at length over the past several weeks to determine if this is an option for me, how a service dog could help, and how much it would cost.

Last week she and I met up in person to discuss the logistics and possibility of a service dog. The meeting went very well and we have determined that having a service dog would absolutely be an option as well as a great benefit to me and aid me with my mobility, security, safety, independence, and mental well-being. The dog would be trained to do tasks such as:

Additionally, the service dog would serve as the perfect companion to help reduce my anxiety, and hopefully aid in the reduction of my seizures.

Unfortunately, the cost of a service dog is very expensive. After the reservation and adoption fees, training costs, insurance, and other expenses (such as veterinarian bills), the total cost of a service dog is around $25,000 US dollars. Because of this my family and I have decided to create this GoFundMe, asking for those who can donate and/or share my page with others, so we can hopefully raise enough money for a service dog.

Thank you to everyone who has taken the time to read my story, donate, and/or share my fundraising page; by doing so, you have helped partake in giving me one of the greatest gifts I could ask for and receive: My independence, safety, security, freedom, and companionship.

-Madi