Help for Jesse- Treatment for Rare Disease
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Our family has been fighting for my nephew Jesse now for over half his life. Jesse is a fun, smart, curious, animal-loving 12 year old who is diagnosed with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus infections) which the National Institutes of Health classifies as a rare disease . This disease starts following a basic strep infection and causes the immune system to go awry and begin to attack the nervous system and the brain causing a huge range of symptoms including tics, OCD, autoimmune encephalitis severe anxiety, Chorea (uncontrolled body movements), depression, sudden mood changes, cognitive and behavioral regression, and more.
Jesse is just home tonight from the emergency room where we had to go following a significant event. Just yesterday, Jesse, 12 years old, had to wear Depends for part of the day due to not being able to control his bladder. The day before his mom, my sister, filmed the videos below of his Chorea. At times he is unable to walk unassisted.
He is in need of treatment as these problems can become permanent and permanently damage his brain if not treated. He's not responded well to the long term antibiotics and steroid bursts they have tried. He needs IVIG (intravenous immunogloblin) treatment which will help to "reset" his immune system and stop the immune system from attacking the brain. However, the insurance company won't cover the treatment and, for one course, this costs around $10,000. The doctor he sees, one of the top specialists in PANDAS, is nearby in Washington DC, but doesn't take insurance. The initial consultation was $1200. Follow up visits are $500+. My sister and brother-in-law, and our family are not wealthy. Between the doctors appointments and the medications, they have spent at least 10-15,000 already on getting a diagnosis and trying treatments. We need help to help my terrific nephew.
We are hoping our friends, family, and community can help us raise the money to afford this life-changing and hopefully life-altering treatment and follow up care. Jesse is such a smart, caring, compassionate young man and he deserves to have a life not dominated by these symptoms that often leave him out of control. He's not been able to attend school this entire last school year due to the severity of the symptoms. He missed his first year of middle school. We need help to help him.
All of the money raised will be used to pay for the treatments and medical appointments for Jesse's PANDAS treatment. We sincerely and deeply appreciate any donation you can share. Please share this with friends and families and encourage others to help out this guy.
----- More info -----
GET MORE INFO AT PANDAS NETWORK
Diagnosis of PANDAS is tricky because there isn't one specific test. Jesse has been struggling with this since first grade. As PANDAS does, it hit very suddenly, changing him almost overnight following a typical strep infection. He began bed-wetting, having severe separation anxiety, problems at school, and hugely different moods. Doctors in our area couldn't or wouldn't diagnose PANDAS and wanted to treat this as mental illness. Jesse has seen psychiatrists, therapists, and taken many different psychiatric meds since 1st grade, but they haven't helped.
We did more research and found a doctor in Washington DC who specializes in PANDAS, which is what we suspected since the beginning, as I had seen several students with PANDAS as a teacher. The doctor did extensive testing and diagnosed Jesse with PANDAS, Autoimmune Encephalitis, and Sydenham's Chorea. Treatment was tried using steroid bursts and he's been on long term antibiotics for months. His symptoms can reduce significantly and then, as soon as anyone is sick, or sometimes without warning, they will flare up hugely. This is where we are now.
Jesse is just home tonight from the emergency room where we had to go following a significant event. Just yesterday, Jesse, 12 years old, had to wear Depends for part of the day due to not being able to control his bladder. The day before his mom, my sister, filmed the videos below of his Chorea. At times he is unable to walk unassisted.
He is in need of treatment as these problems can become permanent and permanently damage his brain if not treated. He's not responded well to the long term antibiotics and steroid bursts they have tried. He needs IVIG (intravenous immunogloblin) treatment which will help to "reset" his immune system and stop the immune system from attacking the brain. However, the insurance company won't cover the treatment and, for one course, this costs around $10,000. The doctor he sees, one of the top specialists in PANDAS, is nearby in Washington DC, but doesn't take insurance. The initial consultation was $1200. Follow up visits are $500+. My sister and brother-in-law, and our family are not wealthy. Between the doctors appointments and the medications, they have spent at least 10-15,000 already on getting a diagnosis and trying treatments. We need help to help my terrific nephew.
We are hoping our friends, family, and community can help us raise the money to afford this life-changing and hopefully life-altering treatment and follow up care. Jesse is such a smart, caring, compassionate young man and he deserves to have a life not dominated by these symptoms that often leave him out of control. He's not been able to attend school this entire last school year due to the severity of the symptoms. He missed his first year of middle school. We need help to help him.
All of the money raised will be used to pay for the treatments and medical appointments for Jesse's PANDAS treatment. We sincerely and deeply appreciate any donation you can share. Please share this with friends and families and encourage others to help out this guy.
----- More info -----
GET MORE INFO AT PANDAS NETWORK
Diagnosis of PANDAS is tricky because there isn't one specific test. Jesse has been struggling with this since first grade. As PANDAS does, it hit very suddenly, changing him almost overnight following a typical strep infection. He began bed-wetting, having severe separation anxiety, problems at school, and hugely different moods. Doctors in our area couldn't or wouldn't diagnose PANDAS and wanted to treat this as mental illness. Jesse has seen psychiatrists, therapists, and taken many different psychiatric meds since 1st grade, but they haven't helped.
We did more research and found a doctor in Washington DC who specializes in PANDAS, which is what we suspected since the beginning, as I had seen several students with PANDAS as a teacher. The doctor did extensive testing and diagnosed Jesse with PANDAS, Autoimmune Encephalitis, and Sydenham's Chorea. Treatment was tried using steroid bursts and he's been on long term antibiotics for months. His symptoms can reduce significantly and then, as soon as anyone is sick, or sometimes without warning, they will flare up hugely. This is where we are now.
Organizer
Casey Day
Organizer
Frederick, MD
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