Isabella's Accessible Van
Donation protected
Nine-year-old Isabella is one in seven billion, literally.
Hello, my name is Isabella Pyle and this is my story.
First of all, I would like to say 'thank you' for taking the time to read this and get to know me a little better. My daddy is writing this, because I can't walk, talk, write, eat or drink anymore.
What Happened?
My life started like any other child: I was born healthy, happy, perfectly normal and excelling in milestones. I loved to dance and sing, and count and push my baby and my Elmo in my shopping cart. Soon all of that changed, literally overnight and I went from your typical rambunctious, loving child to one who could no longer walk, talk, control her arms and legs, eat, drink or even sit up herself.
One in Seven Billion...
Just short of my second birthday and just a day after I danced the night away at a local fair, I was stricken overnight with a dibilitating illness so rare that it has never been documented in medical literature. In fact, I am the only person in the world with this specific condition. It is a leukodystrophy of unknown etiology, so there is no official name for it, but its nearest relative is called CACH with Vanishing White Matter Disease.
What it Means
What does that mean? Basically, imagine that you wake up one morning. Imagine that you retain all of your knowledge and still know everything you have learned. Imagine that you can no longer talk, walk, eat, drink, or sit up. Imagine that you can no longer control the muscles in your body. Imagine that those muscles all contract at the same time in different directions and you fell as though you are being pulled apart.
You can't drink because you will aspirate the liquids into your lungs. Imagine that you have a tube that is surgically implanted through your abdominal wall into your stomach so that you can be fed a special nutritional liquid formula. Now imagine that you try to talk, but instead of words coming out of your mouth, your arm or leg moves. Imagine trying to move your foot, but instead your eyes move and change focus. Imagine that nothing you try works like you want it to.
Imagine being able to understand everything that is said to you, but you cant say anything back. Imagine constantly learning new things...but not being able to ask questions.
This is happening becuase the white matter in your brain is responsible for carrying the electrical signals to those different body parts...and...The white matter is vanishing!
Now imgine being nine years old and being trapped for seven and a half years.
I love to read books and watch cartoons. I love music and I love to watch Tom Bergeron and Ryan Seacrest. Most of all, I like to GO. I like to go to the park, or to the library, to school or the beach, anywhere mommy and daddy can take me.
Our Goal
That's why we turned here. I am getting too big to try and lift and transfer from my pediatric wheelchair to our SUV.
We need to buy a wheelchair accessible van that has been modified. They are expensive ($88,504.20 to be exact), but mommy and daddy have been approved for financing, but have to come up with ten percent as a down payment. We need your help. With the out of pocket expenses for medical, formula, and other supplies, coming up with the down payment is not something we can do alone.
Please help if you can.
You can learn more about me and my condition at: http://wish.issysworld.com and www.issysworld.org
Hello, my name is Isabella Pyle and this is my story.
First of all, I would like to say 'thank you' for taking the time to read this and get to know me a little better. My daddy is writing this, because I can't walk, talk, write, eat or drink anymore.
What Happened?
My life started like any other child: I was born healthy, happy, perfectly normal and excelling in milestones. I loved to dance and sing, and count and push my baby and my Elmo in my shopping cart. Soon all of that changed, literally overnight and I went from your typical rambunctious, loving child to one who could no longer walk, talk, control her arms and legs, eat, drink or even sit up herself.
One in Seven Billion...
Just short of my second birthday and just a day after I danced the night away at a local fair, I was stricken overnight with a dibilitating illness so rare that it has never been documented in medical literature. In fact, I am the only person in the world with this specific condition. It is a leukodystrophy of unknown etiology, so there is no official name for it, but its nearest relative is called CACH with Vanishing White Matter Disease.
What it Means
What does that mean? Basically, imagine that you wake up one morning. Imagine that you retain all of your knowledge and still know everything you have learned. Imagine that you can no longer talk, walk, eat, drink, or sit up. Imagine that you can no longer control the muscles in your body. Imagine that those muscles all contract at the same time in different directions and you fell as though you are being pulled apart.
You can't drink because you will aspirate the liquids into your lungs. Imagine that you have a tube that is surgically implanted through your abdominal wall into your stomach so that you can be fed a special nutritional liquid formula. Now imagine that you try to talk, but instead of words coming out of your mouth, your arm or leg moves. Imagine trying to move your foot, but instead your eyes move and change focus. Imagine that nothing you try works like you want it to.
Imagine being able to understand everything that is said to you, but you cant say anything back. Imagine constantly learning new things...but not being able to ask questions.
This is happening becuase the white matter in your brain is responsible for carrying the electrical signals to those different body parts...and...The white matter is vanishing!
Now imgine being nine years old and being trapped for seven and a half years.
I love to read books and watch cartoons. I love music and I love to watch Tom Bergeron and Ryan Seacrest. Most of all, I like to GO. I like to go to the park, or to the library, to school or the beach, anywhere mommy and daddy can take me.
Our Goal
That's why we turned here. I am getting too big to try and lift and transfer from my pediatric wheelchair to our SUV.
We need to buy a wheelchair accessible van that has been modified. They are expensive ($88,504.20 to be exact), but mommy and daddy have been approved for financing, but have to come up with ten percent as a down payment. We need your help. With the out of pocket expenses for medical, formula, and other supplies, coming up with the down payment is not something we can do alone.
Please help if you can.
You can learn more about me and my condition at: http://wish.issysworld.com and www.issysworld.org
Organizer
Chuck Pyle
Organizer
Bothell, WA
