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%th Grade Safety Partol to to Washington Dc

Organized by: Dusk Taylor

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Chiari Surgery
October 18, 2016

A picture of his incision See More

THE STORY:

Hello, My name is Dusk. I am a happily married woman to my knight in shining armor. He saved my life. He also gave me 2 of the most beautiful & fascinating children. Jabe who is 10 and in 5th grade and my little queen Gracelyn, who is 9 and in the 2nd grade. Let me give you a little history. My husband was a union journeyman electrician for 16+ years, thru the IBEW. We had amazing medical benefits and the money was great. Life was really a dream come true. Until one day in the beginning of October in 2011. He had this headache, that he couldnt shake. He said it felt like a pie was going to burst int he side of his head. So, we went to the ER. The ER ran a bunch of ridiculous testing including a ct scan, and thought he had meningitis. I knew not, he had no fever.They went ahead and did a spinal tap to test for the meningitis. Well, it came back that he didnt have it, (duh), so basically they told us that they thought it was migraines and for him to not sneeze. Sneezing brought him to his knees in pain. After about 1 more week of this insane headache we went to see another doctor. We go see the doctor and tell him EVERYTHING , he orders some testing including an MRI this time (yay). At this point he had this weird looking fluid leaking from his ears and nose. We didnt know what it was. Now we know that it was spinal fluid. We didnt have a clue what was going on. After waiting about 3 1/2 weeks for the doc to call with the results of the mri, they never called. So I called, made an appointment and took him in. My husband was one of the HARDEST working men I have ever met, he would work ALL day with out eating because we had to pay a bill or we where short that week, he was so strong and he absolutely loved taking care of us. That gave him meaning.... A purpose.... Well, we get to the doc, they cant find the MRI, so we wait .. and wait.. and wait...He comes in and has the mri and his hand held computer of some sort. Hes looking up something. As this point, I start to cry.. He says well, Mr Taylor you have something called chiari malformation. He said I dont know much about it, but I have one patient and they are functioning people. So, I wouldn't worry about it. He handed him prescription of pain killers and walked out the door. When we got home i googled chiari. And I thought, well atleast its not a brain tumor!! So, what is this Chiari you say?? Chiari I malformation (CM) describes a crowding of neurological tissues. It is caused by the small size of the rear compartment of the skull and can be present from birth or less frequently, develop later in life. And what does this crowding do? In Chiari I malformation, the lower part of the cerebellum, known as the cerebellar tonsils, hangs down through the opening at the bottom of the skull, preventing cerebrospinal fluid (CSF) from flowing easily into the spinal canal. So, now we have a diagnosis. It took us seeing 5 more doctors, who all told me hubby to go back to work. Go Back To Work? In a bucket truck 300 feet in the air? When one of the main symptoms of chiairi is dizziness.. Yea, go to work Mr Taylor!! Well, by the grace of God we found our savior. Dr Michael Chapparro. He is an AMAZING surgeon and he actually cares. To make this part quick, my hubby lost the feeling in the right side of his body, didnt know when he had to pee pee or poor, he had that fluid leaking constantly at this point. He couldn't even walk. The 1st opening for the neuro was January 12, 2012. Well I knew something was really wrong, so I went to drop his films off just so he could look at them and make the decision if it was safe to wait 2 more weeks. No sooner than I got home from dropping the films off, the neuro had called and told him to immediately go the the hospital he needed EMERGENCY brain surgery, this was Friday January 6th. So we packed a bag and off we went.. Little did we know that the spinal tap they did in the ER exaggerated his symptoms and it caused is cerebellum to get pulled into the spinal column which was blocking the flow of spinal fluid from his spine to his brain, so little did we know his spinal cord was about to basically explode. So we got thru that. THe plan was for Fred to go back to work...... Things dont always go as YOU plan, sometimes someone else has a different plan. The surgeon suggested we get Jabe tested because he has a sacral dimple.. So we had him tested. I found out on my birthday that my son also had chiari and required brain surgery... Jabe was 5 years old. And he was SOOOOO brave. He only used pain medication the first day, he is my HERO. He came thru surgery with flying colors. After 6 weeks they wanted him back to school part time. So we did that. He ended up falling off the playground, quick trip to the ER. He ended up having a grade 3 concussion. He lost hearing and vision in the right side for about 6 months, during that time we had a tutor come to the house. My mother passed away in between all of this. After a long 5 year battle with cancer. I honestly dont know why im not considered crazy. That 6 month period was the hardest thing I had ever ever been thru... Well fast forward. Jabe is doing fabulous at school. He is in 5th grade a First Christian Academy and he is on A/B honor role. And he is also a safety patrol. There is only one 5th grade class, its a private school, all the kids in his class are safety patrols. We get a step up grant to pay for them to go to the school. We dont pay anything out of pocket for schooling. But alo of the kids in the school, they are way better off than we are, and they can afford the trip. We dont have $600 times 2 just laying around. We are already behind on our bills and I cant cut back more than I already have. My husband is 100% disabled now. The fluid that backed up in his spine caused him to have a spinal cord injury. We fought for disability for 2.5 years and we won. We took the back pay and moved to north Florida from south Florida, we lost our house in foreclosure while we where fighting for disability. Well, my hubbys mom just passed away last month, now we are up here with no family now. So, i am almost sure that all the kids in his class with be going on the trip. It makes me feel like a failure as a parent because I cant just got drop the $1,200 on the trip. What makes it harder i, with the chiari, riding an air plane isn't possible for my hubby and Jabe. The pressure is to much for them, they already have elevated inter cranial pressure and the pressure inside an airplane is alot, so the surgeon advised against it. So, they would have to take the train up to DC. The rest of the patrols will be on the plane but not my chiarians. That means they have to leave 13 hours earlier. I never was a safety patrol so I never got he opportunity. My hubby was a safety patrol and hes already to got to go. How is it his fault that his dad has a defect he was born with, and all of this would happen. We have lost so much and it has been our faults. I know its going to break his heart to not be able to go. This is a once in a life time chance. They are going to see all the really cool things about America and Americas founders. I get all excited just talking about it. The bad part is,,, its $600 a person to go. I asked for $200 more so they could have some spending money. Im not going to beg. I just told you our story in a nut shell. I could add so many more details, but its just more depressing. They are putting together fundraisers at the school, which obviously I would participate in every one of them. The down payment was already due. But the headmaster is giving me a little bit of extra time to try to come up with the $. So, if you feel like you want to help us give our son a chance at a once in a life time educational trip, please donate, please help us..

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Dusk Taylor

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