Donation protected
I suffer from Complex Chiari Malformation 1.5, Scoliosis, Ehlers Danlos Syndrome (EDS), and a page full of other related illnesses. Chiari is a life threatening condition in which my brain extends into my brainstem, crushes my brain and causes syrinx (fluid filled cavities) in my spinal cord. All of my spinal fluid that would normally be a protective layer around my spinal cord builds up inside of my spinal cord and the swelling from this is linked to numerous health problems.
My Chiari and related conditions are life threatening and very symptomatic. Through out my daily life, I am made constantly aware of the seriousness of my condition. Even minor movement like driving in a car, laughing, coughing and sneezing is likely to put me in a state of excruciating pain. My symptoms, many of which I experience in a single day, include everything from hearing loss, vision problems, heart palpitations, dizziness, nausea, vomiting, processing issues, motor skill deficits, learning issues, chest pain, trouble breathing, memory problems, balance issues, body weakness, trouble walking, muscle pain, joint pain, body tics, sensitivity to light, neck and back pain, tinnitus, nystagmus, unable to control body temp, and so much more.
I am in so much pain every single day, it makes it hard to leave my house and go to school. My condition and symptoms make it incredibly challenging to lead a normal life as a teenager. Before starting high school, I was homeschooled for an extensive amount of time because I was so sick. Living with my conditions means I am unable to be a normal teenager in almost every aspect of my life. At 13 years old I have the constant worry of the longevity of my body and whether or not my Chiari will lead to common symptoms such as blindness, deafness and paralyzation.
Unfortunately, the seriousness of my condition means a normal neurosurgeon cannot preform my surgeries, and I must see a specialist. Specialists of this nature are out of our insurance network despite all of our efforts to appeal my case. The amount of phone calls, cross country doctor visits, letters and emails to hospitals, insurance and doctors have been an added layer of pressure and stress.
At this moment, the only way I can receive surgery is through taking on the financial burden of an emergency surgery ourselves. This surgery involves a cross country trip to New York and a lengthy stay in Manhattan for testing and monitoring for more than two weeks. Unfortunately, my mother is a single mom and our financial resources are very limited and that means we do not have enough money to meet our needs for the surgery, let alone airfare, transportation, hotels, food, medication, etc.
My mom and I have benefited greatly from the kindness of our community and are looking to our community again during this difficult and scary time. We are asking that if you have anything at all to spare please lend a helping hand and donate. This surgery and medical care would absolutely improve my quality of life and overall health and give me a fighting chance. I’m at risk everyday it takes to set a surgery date. When my Chiari was discovered in December of last year, emergency surgery was highly recommended.
Every little bit is greatly appreciated and means the world to me. If you have any resources you’re aware of, please share with my mom and me. And if you cannot donate, PLEASE SHARE AND PASS ALONG.
Thank you so much!
Logan
My Chiari and related conditions are life threatening and very symptomatic. Through out my daily life, I am made constantly aware of the seriousness of my condition. Even minor movement like driving in a car, laughing, coughing and sneezing is likely to put me in a state of excruciating pain. My symptoms, many of which I experience in a single day, include everything from hearing loss, vision problems, heart palpitations, dizziness, nausea, vomiting, processing issues, motor skill deficits, learning issues, chest pain, trouble breathing, memory problems, balance issues, body weakness, trouble walking, muscle pain, joint pain, body tics, sensitivity to light, neck and back pain, tinnitus, nystagmus, unable to control body temp, and so much more.
I am in so much pain every single day, it makes it hard to leave my house and go to school. My condition and symptoms make it incredibly challenging to lead a normal life as a teenager. Before starting high school, I was homeschooled for an extensive amount of time because I was so sick. Living with my conditions means I am unable to be a normal teenager in almost every aspect of my life. At 13 years old I have the constant worry of the longevity of my body and whether or not my Chiari will lead to common symptoms such as blindness, deafness and paralyzation.
Unfortunately, the seriousness of my condition means a normal neurosurgeon cannot preform my surgeries, and I must see a specialist. Specialists of this nature are out of our insurance network despite all of our efforts to appeal my case. The amount of phone calls, cross country doctor visits, letters and emails to hospitals, insurance and doctors have been an added layer of pressure and stress.
At this moment, the only way I can receive surgery is through taking on the financial burden of an emergency surgery ourselves. This surgery involves a cross country trip to New York and a lengthy stay in Manhattan for testing and monitoring for more than two weeks. Unfortunately, my mother is a single mom and our financial resources are very limited and that means we do not have enough money to meet our needs for the surgery, let alone airfare, transportation, hotels, food, medication, etc.
My mom and I have benefited greatly from the kindness of our community and are looking to our community again during this difficult and scary time. We are asking that if you have anything at all to spare please lend a helping hand and donate. This surgery and medical care would absolutely improve my quality of life and overall health and give me a fighting chance. I’m at risk everyday it takes to set a surgery date. When my Chiari was discovered in December of last year, emergency surgery was highly recommended.
Every little bit is greatly appreciated and means the world to me. If you have any resources you’re aware of, please share with my mom and me. And if you cannot donate, PLEASE SHARE AND PASS ALONG.
Thank you so much!
Logan
Organizer and beneficiary
Logan Blake
Organizer
Fort Worth, TX
Rachael Katz
Beneficiary