- J
Hi, my name is Leland and I have spina bifida. There are varying degrees of this disease and mine is the most severe, myelomeningocele (my-low-men-in-go-seal.) I am 16 years old and my body is affected in every way by this condition. Spina Bifida means ‘open spine’ in Latin. The tube that protects my spinal cord leading up to my brain never closed completely and I was born with a hole the size of a quarter in my back. So far, there is no cure and no one knows exactly what causes it.
My personal quest is to become independent. My future health and happiness depend on achieving this goal. In my opinion, empowering my life is going where I can get the best care from doctors and health providers, who have dedicated their lives to understanding my disease. They will help me to unlock the bondage I am in physically and mentally. This will allow me to live and learn to be proud of myself. I can be independent by understanding how my brain learns so that I can go on to college and further my education. I can be independent by giving back to my family, friends and Church. I will flourish.
I can get help from a team of doctors, special educators and interventionists specifically assembled just for me and my need and desire to become independent. I will get help straightening my spine, detethering my spinal cord, then learn new ways to balance my newly repaired back and body and how to transfer in and out of chairs, vehicles, and bed. I am in need of intensive physical therapy, occupational therapy, rehabilitation therapy, strength training, and a bone strengthening diet.
Right now, I feel my life isn't going anywhere and I have many complex issues. My mom has told me for 2 years now, that we need to go to a place the furthest distance across the United States from where we are now...The Kennedy Kreigar Institute.
The Kennedy Kreigar Institute is part of the Johns Hopkins Hospital, in Baltimore, Maryland. This is THE place that will help me achieve all of my goals, my independence. The Kennedy Kreigar Institute is dedicated to my condition. We met a neuropsychologist at a Spina Bifida Association of America conference in Anaheim, California several years ago.
His name is Dr T Andrew Zabel and he spoke about how unique the cognitive processes are in a a person with spina bifida, hydrocephalus and The Arnold Chiari II brain formation. The main areas of concern are memory, timing and perception. My mom has been talking about his research to me, to teachers, principals, school district special education administrators, our friends, our Church members, my pediatrician, and to those interested in new research findings. Dr. Zabel is the clinical director of neuropsychology at KKI. He has told us personally he would assess me and do whatever he could to help me. I was told I would be eligible for several outpatient programs to help me learn about how to overcome my learning disabilities as well as a team of providers helping me get strong physically and to overcome anxieties and depression caused by my disease and other issues.
I am tormented every day by frustration. I have executive functioning problems. This is the part of your brain that helps you take an idea, turn it into a plan and then into the different components that make it complete. Goal setting, how long it takes to get a task done, the ability to organize, planning, getting somewhere on time are all part of executive functioning. These attention issues and learning disabilities prevent me from remembering the order in which I need to do things to get ready each day. The whole process can take up to 2 hours each morning. The “getting ready” routine combined with time management issues, ADD and Executive Function issues is exhausting and unrewarding. It feels so hopeless some days because I have so many issues with my physical abilities, now my brain isn’t cooperating either. Lacking Executive Functioning skills is like the CEO of my brain, that delegates responsibilities to the other parts of my brain for setting goals, carrying them out, how much time is needed and the order in which tasks should be done is out to lunch. So each morning when my brain employees wake up to the head of the business of my head being absent chaos ensues and this is supposed to be the easy part of my day. Learning for me is almost impossible because I am not able to finish any assignments and all I want is to get an education. I love to learn, but the harder I try, the harder it gets. I can understand all concepts, but the amount of work it takes to get my brain into a cohesive, independent, working unit to learn is so difficult.
At first I didn't understand why we would have to go all the way across the United States for several months to who knows how long to find out how I learn and process information. But now I'm so relieved that we are going.
What we are humbly and graciously asking for are donations, not for medical bills, because I'm happy to say, we are all covered there, but to help my mom and I with the expenses of staying and living in Baltimore near the hospital. Transportation, gasoline, housing, food, geographically appropriate clothing or anything to help sustain us are what we are in need of. We temporarily will not have any income until we are able to find the Baltimore, Maryland equivalent to In Home Supportive Services that we have here in California. This is the program that allows my mom to stay home with me to homeschool, perform my medical procedures and paramedical services by being my paid personal assistant. This program grants me 283 hours of service because of how severe and disabling my condition is each month.
I will be working harder mentally and physically than I've ever worked before to achieve my goals toward independence. I don't just want to get through life, I want to change my life and lives of others. I want to be an example to others, to motivate others to achieve their dreams, for those people who are afflicted with daily struggles and sickness and for those who aren't. Thank you for helping me change my life. I can't do this without your support.
With heartfelt thanks,
Leland
My personal quest is to become independent. My future health and happiness depend on achieving this goal. In my opinion, empowering my life is going where I can get the best care from doctors and health providers, who have dedicated their lives to understanding my disease. They will help me to unlock the bondage I am in physically and mentally. This will allow me to live and learn to be proud of myself. I can be independent by understanding how my brain learns so that I can go on to college and further my education. I can be independent by giving back to my family, friends and Church. I will flourish.
I can get help from a team of doctors, special educators and interventionists specifically assembled just for me and my need and desire to become independent. I will get help straightening my spine, detethering my spinal cord, then learn new ways to balance my newly repaired back and body and how to transfer in and out of chairs, vehicles, and bed. I am in need of intensive physical therapy, occupational therapy, rehabilitation therapy, strength training, and a bone strengthening diet.
Right now, I feel my life isn't going anywhere and I have many complex issues. My mom has told me for 2 years now, that we need to go to a place the furthest distance across the United States from where we are now...The Kennedy Kreigar Institute.
The Kennedy Kreigar Institute is part of the Johns Hopkins Hospital, in Baltimore, Maryland. This is THE place that will help me achieve all of my goals, my independence. The Kennedy Kreigar Institute is dedicated to my condition. We met a neuropsychologist at a Spina Bifida Association of America conference in Anaheim, California several years ago.
His name is Dr T Andrew Zabel and he spoke about how unique the cognitive processes are in a a person with spina bifida, hydrocephalus and The Arnold Chiari II brain formation. The main areas of concern are memory, timing and perception. My mom has been talking about his research to me, to teachers, principals, school district special education administrators, our friends, our Church members, my pediatrician, and to those interested in new research findings. Dr. Zabel is the clinical director of neuropsychology at KKI. He has told us personally he would assess me and do whatever he could to help me. I was told I would be eligible for several outpatient programs to help me learn about how to overcome my learning disabilities as well as a team of providers helping me get strong physically and to overcome anxieties and depression caused by my disease and other issues.
I am tormented every day by frustration. I have executive functioning problems. This is the part of your brain that helps you take an idea, turn it into a plan and then into the different components that make it complete. Goal setting, how long it takes to get a task done, the ability to organize, planning, getting somewhere on time are all part of executive functioning. These attention issues and learning disabilities prevent me from remembering the order in which I need to do things to get ready each day. The whole process can take up to 2 hours each morning. The “getting ready” routine combined with time management issues, ADD and Executive Function issues is exhausting and unrewarding. It feels so hopeless some days because I have so many issues with my physical abilities, now my brain isn’t cooperating either. Lacking Executive Functioning skills is like the CEO of my brain, that delegates responsibilities to the other parts of my brain for setting goals, carrying them out, how much time is needed and the order in which tasks should be done is out to lunch. So each morning when my brain employees wake up to the head of the business of my head being absent chaos ensues and this is supposed to be the easy part of my day. Learning for me is almost impossible because I am not able to finish any assignments and all I want is to get an education. I love to learn, but the harder I try, the harder it gets. I can understand all concepts, but the amount of work it takes to get my brain into a cohesive, independent, working unit to learn is so difficult.
At first I didn't understand why we would have to go all the way across the United States for several months to who knows how long to find out how I learn and process information. But now I'm so relieved that we are going.
What we are humbly and graciously asking for are donations, not for medical bills, because I'm happy to say, we are all covered there, but to help my mom and I with the expenses of staying and living in Baltimore near the hospital. Transportation, gasoline, housing, food, geographically appropriate clothing or anything to help sustain us are what we are in need of. We temporarily will not have any income until we are able to find the Baltimore, Maryland equivalent to In Home Supportive Services that we have here in California. This is the program that allows my mom to stay home with me to homeschool, perform my medical procedures and paramedical services by being my paid personal assistant. This program grants me 283 hours of service because of how severe and disabling my condition is each month.
I will be working harder mentally and physically than I've ever worked before to achieve my goals toward independence. I don't just want to get through life, I want to change my life and lives of others. I want to be an example to others, to motivate others to achieve their dreams, for those people who are afflicted with daily struggles and sickness and for those who aren't. Thank you for helping me change my life. I can't do this without your support.
With heartfelt thanks,
Leland