Racing for Rylee

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Rylee has had an eventful life from day one. He came 6 weeks early and then spent 2 1/2 weeks in the NICU. Then at the age of 7 weeks he had to have surgery to repair pyloric stenosis( which meant his food was not going out of stomach). This then left him with bad acid reflux that he still battles. We contined to watch our sweet boy grow but not progress any developmentally.

At age 1 he could hardly sit up and not talking. We knew then there was something wrong. From this point on for the next couple years we went from doctor to doctor looking for answers. Rylee was diagnosed with Mild Cerebral Palsy and we continued with occupational therapy, physical therapy and speech therapy aggressively and we were ecstatic when he took his first steps at age 2! 

At the age of 5 after waiting for months to get in he was evaluated for Autism and then  was diagnosed. We researched and learned as much as we could about his diagnosis and he has come a long way in the past 4 years.  

Over the past year we started to see some changes in Rylee and thought maybe it was just because he was getting older, but it has gotten progressively worse. He has had MRI's and EEG's trying to figure out what is going on, they have all shown signs of being abnormal but nothing has been found that can give us any answers.  The Drs have always told us that there is something happening butmthey cant figure out what.

Rylee has always been such a sweet, loving child but now his behavior has changed so much. Now he is frustrated, aggressive at times, impulsive, pupils become dilated and will say things that are inappropriate. We know this isn't our child.  We recently were referred to another Neurologist and we know that it really isn't him, he is having absence seizures. These seizures can be causing his behavior to change so much. The doctor believes he needs further testing that is not available in our area in order to treat him correctly. The place we need to go to is in Orlando, Florida- a children's epilepsy center. They want to admit him for 5 days to do all the testing and determine what treatment plan is going to be best for him going forward to be able to get him back to living as close to normal life as possible.
We would do anything to help our son and get his smile back on his face. We started this page to try and help pay for exspenses for the cost of the trip and help with medical bills that will come alone with the intense testing. We are a family of 5.  Rylee also has two sisters and they would love to have their brother back that they can play with again.  

We Greatly appreciate every member of Team Racing for Rylee and thanks to everyone who shares , likes and looks at our page. We would be very thankful for any prayers sent up for us as well.

 Thanks and God Bless, The Dansby's

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Amanda Dansby 
Abbeville, SC
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