CHRISTOPHER!!!!!
Chris & Bronx
I am so very very excited to introduce you to our newest KARE Fighter Christopher! I just recently "met" Chris, Bronx and his awesome mom Janet thru an awesome organization Wish Upon A Hero (http://www.wishuponahero.com/) and instantly fell in love! I really have to say it again that these kids hold such a very special place in my heart. They go thru so many battles and hardships each and every day but they still smile! Like one mama had mentioned you can see the FIGHT in these kids eyes and you really can! I hope you enjoy learning about Chris and Bronx and that you come to love them as much as I do (if that is possible :->)
I decided to something different this month and start with a Q&A with Chris then we will go into his bio. Also, as you have come to enjoy amazing photos of my two new buddies! Thank you for learning more about Chris and another view on epilepsy! ~ Rose
Question and Answer with Chris and his Mom
Q: What do you feel is the hardest thing about living with epilepsy?
The thought of having a seizure is scary and always looming...I am always afraid that the next seizure will send me into respiratory and cardiac arrest. Most of my friends stopped hanging out with me because of it. My childhood is limited by epilepsy and that sucks!
Q: What would you like others to know about epilepsy?
I would like people to know that just because I have epilepsy that I am still a person, not some alien. That you can be my friend - my seizures are not contagious! I have seizures, I am not deaf - please do not talk about me - I can hear you! I have feelings!
Q: Chris, do you know when you are going to have a seizure?
Yes, most of the time I can tell when a seizure is getting ready to happen. I get light-headed and sick to my stomach...then the seizure comes.
Q: Chris, what is the best thing about having your pal Bronx?
Bronx makes me feel safe! Before I had Bronx I was too afraid to sleep in my room - I was afraid I would die and no one would know. The very week that Bronx was delivered I slept in my room - the first time in four years! Bronx is my best-friend - he is always there to listen, he never judges me, and he never says mean things to hurt my feelings. Bronx being with me means that I never have to go through another medical procedure alone!
Bronx is learning how to dial a cell phone which will give me even more freedom. If I am away from the house and something happened Bronx will "bite" the special phone case and it will dial 911 for me!
Bronx is also my eyes! Because I can no longer see anything to the right side, Bronx was trained to be a guide dog.
Q: Mom, was it hard to get a service animal for Chris?
The first problem we ran into was the cost of the service dog. Our health insurance would not cover a service dog - none - and most service dogs were about $10,000. With all of Chris's medical bills that left us paying for his service dog out of the question. If the program was "free" it was for older children and had a long waiting list.
I researched several kennels that trained services dogs for children, but some gave the children puppies, some did not use German Shepherds, most had very long waiting lists, some were outrageously expensive, and most would not deliver the dog to Chris. We found Highland Canine Training in Harmony, NC: they would consider matching with a German Shepherd, they were reasonably priced, they would deliver the dog, and they did not have a long waiting list.
Now, how to raise $10,500 to get him the service dog?! Our Pastor helped us fill out the application for a program in our church conference. It was his hope that they would donate part of the money and we would have to fund raise for the remainder. When the call came in I could not believe my ears - they were paying the entire amount!
Once Chris was accepted to the Service Dog program at Highland Canine we waited for the "Meet and Match" date. We went to Highland and there were several dogs there that day, but Chris held out to meet the German Shepherd first. Bronx came in the room and it was if they knew each other for a lifetime. Chris and Bronx were matched and the journey began!
Q: Mom, what does Chris like to do for fun?
Chris is writing a second book "Before I Shake" and it is going to tell about life with Bronx. Chris said to tell you that he is not drawing this time - it is going to be photographs of his life with Bronx. It will cover everything from the match to present day!
He "kicked off" his own website - 1Boy4Change. It has a store where you can purchase his books, his music CDs, his piano DVDs, his t-shirts, bumper stickers, etc. - all of this will help support charities of his choosing! The website has a BLOG so people can follow his adventures with Bronx. The website will be educating the world about children with service dogs and changing laws dealing with service dogs with children handlers. It is a platform for him to share what he feels passionate about over the years! It has links to "many" other sites that he supports! He designed his own logo for the site - wait till you see it!
He enjoys building LEGOs and LEGO NXT Robotics - he has made a rattlesnake that shakes its tail and strikes, a scorpion that strikes and retreats, a remote controlled spider, and many vehicles that perform different tasks. There are two videos on YouTube about his LEGO robots!
He enjoys doing kung fu forms, swimming and going to the beach.
He dreams of becoming a LEGO Engineer or a Service Dog Trainer and one day --- living in the Keys off Florida!
I hope that you have enjoyed the Q&A with Chris and his mom and that you have equally enjoyed some of the photos! The following you will now read is the bio of Christopher. His journey of where he has come from to where he is today. I hope you enjoy reading it as much as I have!
I would like you to meet my "hero", Christopher Carswell! He is 13 years old and the bravest fighter I know...
Christopher has been fighting before he was even born. I had a difficult pregnancy and he was delivered six weeks early. He was born with multiple birth defects and health problems. He showed everyone on September 1, 1998 that he was here and was going to fight! The first three years of his life were governed by doctor appointments, tests, surgeries (some went well and some went terribly wrong), and therapy! We had a therapist in our home five days a week. Every milestone was a reason to celebrate!
With all of the doctor visits, tests, and surgeries came no answers, no diagnosis - nothing. The orthopedic surgeon reconstructing his right hand could give no reason for "why" Christopher had a birth defect that affected his hand. The neurologist that was seeing him for the stroke and brain malformation could give us no explanation. We were told that Christopher was at a high risk of seizures and he might have an autism spectrum disorder. The doctor that did Christopher's tonsil and adenoid surgery, that left Christopher with a feeding tube, he blamed Christopher. He told us that out two year old had an eating disorder - what?! He ate fine before the doctor paralyzed his epiglottis flap! Our first pediatrician told the speech therapist that Christopher would never talk - to teach him sign language (sure am glad she didn't listen to the pediatrician)! So many obstacles, but he kept smiling and fighting, even on days when I couldn't!
When he started public school we learned just how cruel young children could be... Christopher still had to have more hand reconstruction done. When he told the children "why", that is when he was called names and alienated (as a four year old).
Throughout his elementary education he would miss so much school due to health issues. Most years he would end up on the county's hospital home bound program. When he would be healthy enough to attend school he was small and fragile looking - a very easy target for bullies. Thanks to good teachers and a couple of great friends the bullies never got the best of him... His friendship with one little boy was going to save his life and no one knew it.
October 11, 2007 seem like a normal day in the life of third grader until lunch time at school. Christopher and his best friend were seated for lunch with the Tonic-clonic seizures started and wouldn't stop. Christopher's friend yelled for help and the nurses came. He went into respiratory and then cardiac arrest, but God was with him - there was a paramedic squad around the corner from the school! By them time I reached the school the paramedics had Christopher in the back of the quad - he had tubes and lines everywhere! The scariest thing is when I looked at him in the back of the squad and his little body was limp and his lips were "purple." I knew from my experience as a medical professional that we were in serious trouble! He was taken to the children's hospital in Jacksonville, Florida where he was stabilized and admitted to the PICU. None of the doctors could explain what was going on... Christopher kept fighting!
After he was released from the hospital he was so heavily medicated that he could not return to school. He was a zombie on medicine - no longer happy or smiling. We went back to the doctor, but he would not change his treatment plan for Christopher. Time for Mama Bear intervention! I started researching and calling hospitals that were supposed to have the best doctors, research, and treatments. I ended up finding Miami Children's Hospital, the Pediatric Brain Institute and Dr. Ian Miller. I explained everything to Dr. Miller and he admitted Christopher to the Brain Institute. He weaned Christopher off the medication and monitored him twenty-four hours a day for two weeks. He sent him home without daily medication (we were sent home with emergency medication) to see what was going to happen. The Tonic-Clonic Seizures did not come back - he had smaller seizures, but we were willing to live with it as long as Christopher was. He finished fourth and fifth grade with other medical challenges, but no serious issues with seizures. He had bilateral leg casts and was in a wheelchair for three months, but at least it was not a serious seizure.
As a family we decided that Christopher needed a service dog to improve his quality of life. After researching and getting funding, Christopher was on the list for a "meet and match" at Highland Canine Training in Harmony, North Carolina - Summer 2010. Christopher was matched with Bronx and training began. While Bronx was being trained for everything Christopher needed him for we had decided to send Christopher to a private school for 2010-2011 school year. We knew he wouldn't start school with Bronx and we figured it would be an easier transition in a smaller Christian school.
Christopher started sixth grade and was doing as well as we could expect. He was still having health issues and we still had "no answers." We went and visited Bronx and longed to have him home to help Christopher, but it would be months before he was ready to work. Christopher started to have more seizures as we headed back to Miami. This time, Dr. Miller, put Christopher back on daily medicine and a new emergency medicine for us to use - "just in case." January 2011 Bronx was delivered to Christopher! Everything seemed "right" in the world! Christopher had no trouble at school from the other children and Bronx seemed to "live and breath" Christopher! The joy would be short lived - Christopher's seizures got worse and two weeks after Bronx arrived we were headed to Miami to spend two weeks in the hospital... 2011 jut got worse from there.
Christopher was finally going to be diagnosed with epilepsy and that was the easy one (left occipital lobe damage causing the seizures). We were told that Christopher has soft-spots in this skull now - Bilateral Parietal Foramina (yes, like the ones a on a newborn baby). We would have to change his life-style to protect his head since there were two areas no longer covered by bone. (time to get rid of our horses, his four-wheeler, no more P.E., no contact sports, no kung-fu except for forms, no more ziplines, and no more treehouse). Then we were told Christopher was partially blind - he could not see anything to the right from either eye - Right Homonymous Hemianopsia (so he only saw the left half of anything). He would never be able to drive and this was devastating since he dreamed of Classic Mustangs! So, I was already counting three strikes, but it was not going to stop there! We were told that he had Mitral Valve Prolapse w/trivial regurgitation, scoliosis, hyper-mobile joints and hypotonic muscles... I couldn't even breathe at this point and then I look over at Christopher and he is smiling, hugging Bronx - fighting!
We were sent home with Christopher on two different anti-seizure medications and a new "emergency" medicine. The medicine made Christopher sleep twelve to fifteen hours, so I withdrew him from school and he started homeschooling with Southeast Academy Online. He could do school when he was awake enough to think. We took down the ziplines in our yard, we found homes for all the horses, but thanks to generous construction worker, Christopher did not lost his treehouse! The man built a ramp and landing system all the way up to his treehouse! Never being able to drive still hurts and he doesn't talk about it too often. He enjoys the blessings and moves past the bumps in the road (better than me).
He is down to one medication a day now. He is in seventh grade and making straight A's. He loves playing the piano and donates his time to play at the senior daycare center. He writes books and records piano CDs. He started his own website - http://www.1boy4change.org/ - did it all, even designed the logo! He competes in the handicapable martial art tournaments - he won first place in his age division. He loves to build with LEGO - he builds and programs robots with LEGO NXT! He loves to swim and go to the beach. He seems to soak up every minute of everyday - living for the moment!
I asked him about it once, his attitude... and he told me that he never knows what will happen with his health, so he doesn't want to live with regret of "not" doing something when he could have done "something!" I wish I could be more like my son and that is why he is my "HERO!"
Christopher's life verse from the bible is: "We walk by faith, not by sight." 2 Corinthian 5:7
I hope you have enjoyed learning a little bit more about Chris and Bronx! I also hope that you took away a lot from this blog post a few important things: People with epilepsy have feelings too, You can not "catch" epilepsy from someone that has it really that just are people like you and me and make really great friends! Most importantly live everyday like Chris does! As he had said he does not know what will happen with his health so why feel sorry for what you did not get to try. Chris is an amazing young man who does so much for others I hope we can all be just a little like Chris! He also reminds me so much of Kyle, keep fighting and do it with a SMILE!! Chris is also training to be at our 5K Walk and Run at the Philadelphia Zoo, to find out more about that visit http://www.eraceepilepsy.com/. If you can not join us I ask that you at least consider making a donation to Chris's page: http://eraceepilepsy5k.com/participant/6337 ~Rose
We will be looking to have someone featured as our February Fighter! Please know that we can keep all of your information private and we do not need to share any photos if you do not wish. If you are interested please email Rose@karefoundation.org. It can be a newborn, toddler or teen. If you are an adult that would like to share your story we would love to hear from you as well! ~Rose
