Im a student at Parsons Junior Highschool and my class is doing a secret project in order to raise funds to help a girl named Rylee who has a disease called leukodystrophy, to pay for medical expanses. I am doing a Walk-a-thon. This is her story quoted from her mom.

Rylee (6), was diagnosed with Leukodystrophy on July 29th 2014. We are asking for any type of financial assistance with medical bills and possible travel expenses. Our main expense will be used flying back and forth to see a specialist in PA. This is very important, as this disease is rare and not many doctors know much about it. There are only two doctors in the country that specialize in rare neurological brain disorders. Seeing a specialist will provide us and our daughter with the best chance possible. The specialist recommends that we be seen every 3-6 months due to the rapid progression of this disease. 

Our secondary goal for this site is to have the ability to fit a life time of memories within the next couple of years with our little girl. We don't know how long we will have with her or what the future holds, so we want to cherish any time we have together and let her have the best time possible.

First, let me start off by describing our Rylee. Ever since she was tiny she was very attentive and excited to learn. She hit all of her milestones on time, if not early. Her favorite activities were puzzles, games, and anything educational. She loved to play with others, color and play with barbies. She was very happy and she was one of the top students in her Kinder class. In March she started having wetting accidents, this was VERY unusual as she never had an accident since we was potty trained at 2. I immediately took her to the Dr. and all of the tests came back normal. They suggested that she was getting lazy and holding it too long. Shortly after, she started having bowel accidents and the doctors suggested she was constipated. Sometime in April I started noticing her attitude changing. She was emotional, fatigued, her writing which use to be clear and very neat was shaky and sloppy. She also started asking for help eating and getting dress. She use to do her homework assignments right away and looked forward to completing it, now she was barely able to get through a half a page. Her attention span and patience was short. She started talking loud and becoming irritable. She was having headaches and her walking became clumsy and she would fall often during walks. When we would play games, such as Candyland, she would forget the rules and what to do next. She had a hard time remembering and following simple instructions. In June I took her back to the Doctor and told them about these symptoms and that I felt like she was regressing. Her Doctor had her do some simple tests and suggested that we have blood work done and get her in for a MRI. At the end of July we were finally able to make the 3 hour drive to a hospital in Sacramento for an MRI. The Doctors said that they found some abnormalities and they would like us to be admitted into UC Davis Medical Center. We went over right away and were admitted. 

The next day the neurologist came in to talk to us and explained that Rylee had a disease called Leukodystrophy. I've never heard of this disease. She explained that there are over 40 different types of Leukodystrophy and that it is a brain disease that affects the myelin cells, which is the matter that protects the nerve cells. When this happens it slows the messages between the brain and the rest of the body. This leads to problems with speech, hearing, vision, all motor skills, and overall movement. Basically it shuts everything down and you lose the ability to eat, talk, move, hear, and see until it finally takes you completely. There is no cure, and treatment such as physical therapy or transplants only temporarily help but this is an aggressive, progressive disease. The neurologist suggested that Rylee have another MRI, blood work, and lumbar puncture (spinal tap) done and for us to talk to their genetic counselor, which we did while still admitted at Davis. Doing this will hopefully help narrow down which type of Leukodystrophy she has and will hopefully give us a better understanding as to what specifically we should expect in the future. This however is a big process and could take months. So in the meantime we are left to do different therapies that will hopefully slow down this regression process. While we were at Davis we also found out that Leukodystrophy is typically a genetic disease, which means there is a chance her younger brother could also have this disease. We found a specialist in Pittsburgh that we would love to see. We are hoping to make it there at the end of August. In the meantime we are talking to Caden's doctor and asking him to do blood work to see if Caden is affected.  

This is all very devastating, especially since we already lost our first born to a rare condition called Hydrops Fetalis. I've never thought I'd now possibly lose both of my other children. I feel so defeated, but I am refusing to give up. I ask that if you are able to donate to help with medical cost and possible travel expenses to Pittsburgh then please do so and try to save our little girl and boy.  Thank you!