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Gracie Sawyers hasn't added a story.
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!
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