100 days of fighting #dellastrong
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100 days of fighting.
October 7, 2015 Marks the 100th day my brother Dylan has been fighting for his life. Prior to June 30th 2015, Dylan was an active, healthy, hard-working guy who enjoyed working out daily, taking care of his puppy Koa and spending time with his family. A few days leading up to June 30th, my mom had noticed neurological changes occurring within Dylan including insomnia, severe headache, ringing in the ears, fever, stiff neck and periods of mania. Because Dylan had just started a new workout regimen and new supplements, he attributed his soreness and insomnia to his new routine. The ringing in his ears he thought was from working close to planes for several hours a day. Nobody in my family would have anticipated the horrible events that would occur on June 30th.
His first of many seizures happened on June 30th 2015. Dylan was at work with his best friend Jake when he seized and stopped breathing. Jake was able to bring Dylan to paramedics close by who were able to perform CPR and transport him to UCSD Hillcrest Medical Center. There, in the emergency department he continued to have seizures, high temperatures and was completely unresponsive. They put a breathing tube to support his airway and placed him in a medically induced coma. His symptoms presented as a type of meningitis, so they placed him in isolation and sent him to the Neuro Critical Care Unit where we had to wear a gown, gloves and mask to be close to him. The UCSD Neuro Critical Care Medical Team has performed numerous lumbar punctures, MRIs, CT scans, blood draws and x-rays and has finally diagnosed him with a rare autoimmune disease called Anti-NMDA receptor encephalitis.
We’ve learned over these 100 days that the reason why Dylan has a breathing tube, and is neurologically not the 23 year old brother I know is because this anti-NMDA receptor encephalitis has attacked parts of his brain that are important for all these functions. N-methyl-D-aspartate (NMDA) receptor proteins are found in the brain and are critical for day to day activities including breathing, swallowing, interacting, and memory formation. In Dylan’s case we don’t know why or how this developed, but we do continue to be positive and hopeful.
The UCSD neuro team continues to be very aggressive and proactive with treating Dylan's rare condition as well as his aspirated pneumonia and other infections that came along due to his weak immune system. He has already undergone 16 treatments of Plasmaphoresis, 5 treatments of Rituxin, 5 treatments of IVIG and is currently scheduled for Cytotoxin once a month for the next 3 months. Plasmapheresis is a blood purification procedure used to treat several autoimmune diseases. Its job is to remove bad antibodies and replace them with healthy new antibodies. It is also known as therapeutic plasma exchange. Rituxin, IVIG and Cytotoxin are a form of chemotherapy in which the B cells will attach to the rouge NMDA antibodies and mark them for destruction. We are now waiting for the lumbar puncture and blood titer results to see where Dylan is at today.
After being in a catatonic state for over 2 months, Dylan is slowly starting to wake up and shows slight signs of improvement. Although he is still not able to follow commands or respond, he is intermittently able to make eye contact and track people in the room. He is also having less "storming" or rhythmic movements but is now battling stages of hallucinations and delirium. Unfortunately we are unable to obtain a neurological baseline or gauge his neurological deficits at this time.
Our hopes in starting this Gofundme account is to raise public awareness of this terrifying rare disease, Anti NMDA receptor encephalitis. My family and I have researched the web, read the very few published articles and books, as well as case studies of this rare disorder, in hopes to understand the recovery process. The recovery process from anti-NMDA encephalitis can take many months to years. My family and I hope to raise enough money to provide Dylan with every opportunity to make a full recovery without sacrificing his quality of life. As you can imagine, the price of around the clock healthcare in the Neuro CCU, is substantially adding up and each infusion is more than $20,000.
Between the three of us, Mom, Dad & I, Dylan is never alone. We continue to be strong in faith even through the darkest of days. We ask that you continue to keep Dylan in your thoughts and prayers.
Much love & aloha
The Della family
October 7, 2015 Marks the 100th day my brother Dylan has been fighting for his life. Prior to June 30th 2015, Dylan was an active, healthy, hard-working guy who enjoyed working out daily, taking care of his puppy Koa and spending time with his family. A few days leading up to June 30th, my mom had noticed neurological changes occurring within Dylan including insomnia, severe headache, ringing in the ears, fever, stiff neck and periods of mania. Because Dylan had just started a new workout regimen and new supplements, he attributed his soreness and insomnia to his new routine. The ringing in his ears he thought was from working close to planes for several hours a day. Nobody in my family would have anticipated the horrible events that would occur on June 30th.
His first of many seizures happened on June 30th 2015. Dylan was at work with his best friend Jake when he seized and stopped breathing. Jake was able to bring Dylan to paramedics close by who were able to perform CPR and transport him to UCSD Hillcrest Medical Center. There, in the emergency department he continued to have seizures, high temperatures and was completely unresponsive. They put a breathing tube to support his airway and placed him in a medically induced coma. His symptoms presented as a type of meningitis, so they placed him in isolation and sent him to the Neuro Critical Care Unit where we had to wear a gown, gloves and mask to be close to him. The UCSD Neuro Critical Care Medical Team has performed numerous lumbar punctures, MRIs, CT scans, blood draws and x-rays and has finally diagnosed him with a rare autoimmune disease called Anti-NMDA receptor encephalitis.
We’ve learned over these 100 days that the reason why Dylan has a breathing tube, and is neurologically not the 23 year old brother I know is because this anti-NMDA receptor encephalitis has attacked parts of his brain that are important for all these functions. N-methyl-D-aspartate (NMDA) receptor proteins are found in the brain and are critical for day to day activities including breathing, swallowing, interacting, and memory formation. In Dylan’s case we don’t know why or how this developed, but we do continue to be positive and hopeful.
The UCSD neuro team continues to be very aggressive and proactive with treating Dylan's rare condition as well as his aspirated pneumonia and other infections that came along due to his weak immune system. He has already undergone 16 treatments of Plasmaphoresis, 5 treatments of Rituxin, 5 treatments of IVIG and is currently scheduled for Cytotoxin once a month for the next 3 months. Plasmapheresis is a blood purification procedure used to treat several autoimmune diseases. Its job is to remove bad antibodies and replace them with healthy new antibodies. It is also known as therapeutic plasma exchange. Rituxin, IVIG and Cytotoxin are a form of chemotherapy in which the B cells will attach to the rouge NMDA antibodies and mark them for destruction. We are now waiting for the lumbar puncture and blood titer results to see where Dylan is at today.
After being in a catatonic state for over 2 months, Dylan is slowly starting to wake up and shows slight signs of improvement. Although he is still not able to follow commands or respond, he is intermittently able to make eye contact and track people in the room. He is also having less "storming" or rhythmic movements but is now battling stages of hallucinations and delirium. Unfortunately we are unable to obtain a neurological baseline or gauge his neurological deficits at this time.
Our hopes in starting this Gofundme account is to raise public awareness of this terrifying rare disease, Anti NMDA receptor encephalitis. My family and I have researched the web, read the very few published articles and books, as well as case studies of this rare disorder, in hopes to understand the recovery process. The recovery process from anti-NMDA encephalitis can take many months to years. My family and I hope to raise enough money to provide Dylan with every opportunity to make a full recovery without sacrificing his quality of life. As you can imagine, the price of around the clock healthcare in the Neuro CCU, is substantially adding up and each infusion is more than $20,000.
Between the three of us, Mom, Dad & I, Dylan is never alone. We continue to be strong in faith even through the darkest of days. We ask that you continue to keep Dylan in your thoughts and prayers.
Much love & aloha
The Della family
Organizer
Danika Della
Organizer
San Diego, CA
