Cameron's Medical Fund
You ask what a 1% er' is....
It's a person that has experienced a brain arteriovenous malformation commonly known as AVM. Basically it's a tangle of abnormal blood vessels connecting arteries & veins in the brain. Arteries take oxygen-rich blood from the heart to the brain. While veins carry the oxygen-depleted blood back to the lungs and heart. A brain AVM disrupts this vital process. Basically the blood vessels ruptured and caused bleeding inside my brain. Brain AVM's are rare and affect less than 1% of the population. Hence I'm a 1% er'...!!
What causes AVMs is not clear. Most people are born with them such as myself. But before this happened, it was a normal day in the life of this 11 year old.
Currently I attend Belle Terre Elementary School in Palm Coast, FL and I'm in the 6th grade. In my spare time I enjoy surfing, skateboarding , scootering, riding my bike and video games. I recently became involved in scouting. Which I enjoy alot. The picture above is me returning from a camp out with the Boy Scouts of America Troop 281 of Palm Coast FL.
I'm hospitalized at the Wolfson Children's Hospital in Jacksonville Florida if anyone wants to come and visit me. So far I've under gone a few surgeries to drain the pressure off my brain. I'm unsure of what damages to my brain I have going on. But each day gets alittle bit better.
I know I have a long road of recovery ahead with unknown obstacles and financial burdens. I created this to help spread the word about AVMs and to raise funds to help pay for my ongoing treatment and medical expenses. Which I know are going to be very expensive. Any type of donations will be greatly appreciated and directly used to help with these financial burdens.
Thank you so much for listening to my story. Please feel free to share with your family, friends, co-workers and anyone else who will listen. Let's bring awareness about AVMs in hope that no one else has to go thru this type of conditio like myself.
Thank you for listening,
#livelikecam #careforcam #avmfighter #defeatavms
Cameron has progressed so much in the past year, and we are all very proud of him. I thought I would share with you all some of his recent milestones.
Cameron started the 7th grade along with all of his friends at Indian Trails Middle School. He has a paraprofessional that assists him throughout the day with his academic tasks. She is basically his hands (since he cannot use his right hand), and she is wonderful to him. He only goes to school for his core academics, so he is out of school by 11. This allows him to continue with therapy in St. Augustine 3x a week. He is managing to maintain passing grades in all subjects, and he enjoys going to school very much.
Cameron is making more and more attempts to utilize his right arm and hand where he can. He understands that in order for it to improve, he must try and use it as much as possible. He is a very smart kid, so he is very creative when it comes to completing a task with only one fully functioning arm. We also try to challenge him as much as possible in being independent, even when the task seems impossible. Last week, Cameron wanted breakfast. I told him to try and make himself some cereal, and if he needed help to just ask me. I heard some rustling around in the kitchen, so I went to check on him and open up the milk carton for him. Much to my surprise, he had opened the milk carton on his very own, with his right hand!! He had used his right hand to grasp the top, and his left to spin the carton! Very nice Cameron!! When we see him doing things like this, it makes us very proud and gives us reassurance of his ability to take care of himself.
Up until 2 weeks ago, Cameron had almost completely stopped using his wheelchair (outside of school). With the use of his APO (leg brace), he could walk for long stretches very steady and without aid. However, recently, the tone/spasticity in his leg/foot has returned with a vengeance and walking is currently very painful for him. Let me explain the “tone/spasticity”: Cameron’s central nervous system is not functioning properly due to the damage to this area in his brain that controls the muscles in his leg/foot, which causes involuntary contractions. When Cameron straightens his right leg, his right foot contracts into a pointed position and will not release. The only treatment that we have found that works is botox injections into these problematic muscles. This is a very painful procedure, but it does last for 4-6 months. I have made the appointment to start the process, but unfortunately, he has to wait until the beginning of May for some relief. This is very upsetting, as without this, his progress in physical therapy will be on hold.
Cameron will also be getting new AFOs (braces) on both of his legs to better improve his gait. Recent studies have shown that the use of AFOs on both legs have shown better improvement than on one leg alone. Having two braces will be more of a struggle, but the end result will be worth it. His therapist predicts that he will wear the braces for 2-3 years before going back to the use of only 1 smaller brace. It is highly unlikely that Cameron will ever be able to walk normally without the use of an AFO.
Cameron’s attentiveness and comprehension has also made great stride. He is not as tired as he used to be and when he wants to, he can contribute much to a conversation, loudly and clearly. His teachers reported in a recent IEP meeting, that Cameron contributes to all class discussions and is able to follow and understand most all concepts.
Cameron did have a follow up MRI in November (2016) to track the progress of his AVM since his Radiosurgery in July, however there was no improvement in the size. The results of his radiation could take up to 2-3 years before fully improving. Our next step in treating the AVM will be another Angiogram/MRI and possible embolization in the next 3 months.
We had another surprise visit last week from the Palm Coast Observer. They asked to do an update article on Cameron and share his progress over the last year. Cameron really enjoyed the interview and was very clear and concise with his answers.
This article will only be printed in the Grand Haven Observer, which is strictly delivered to the residents of Grand Haven only.
In the article, it speaks of my recent battle with health insurance coverage. Medicaid did drop us, and Cameron was put on a self-pay plan, which was to cost $220 per month, 5k deductible, and 25% copays AFTER the 5k deductible was met. There was no way that we could afford this, as Cameron’s therapy sessions alone would cost up to $225 per week! I ended up adding him to my health insurance plan through Grand Haven, where the premium is about the same, but the deductible and copays are a little bit more reasonable. The future expenses are unclear, but we will do what we have to make sure that Cameron receives the best of care.
I know this update is long, but it has been a long 6 months and much to update you all on. I will leave you all with Cameron’s commemorative slideshow of the past year. Here’s to Cam! You Rock!!
Thank you all for the love you have shown for my son!
Until next time,
Cameron’s weekly schedule consists of school (via hospital homebound/home-school) Mondays and Tuesdays, and 2.5 hour therapy sessions Wednesday through Friday working on Physical, Occupational, and Speech at Brook’s Pediatric in St. Augustine.
Cameron is doing amazing in school! He is still just as bright as before his rupture, and continues to amaze everyone with his math skills, doing most everything in his head and producing correct answers. I received his first report card two weeks ago, and I am very happy to report that Cameron made A/B Honor Roll! His teacher assured me that Cameron is on the same curriculum as all the other 7th graders in the county, and his grades reflect that he is very much on track with regard to his education! Go CAM!!
Cameron’s physical progress is, in the same way, very impressive! He is starting to walk more and more with each week. At home, he rarely uses his wheelchair to get around. He chooses to walk as much as he can. He knows that the more he walks, the stronger he gets! With stroke victims, “drop foot” is almost always a lingering physical ailment that impedes the progress with walking. And, unfortunately, Cameron is no different. His drop foot is pretty severe, making it very difficult for him to walk at an average pace. Because of this, we had a brace made for his right foot. This brace (although a little difficult to get on and off), keeps his ankle aligned properly, allowing him to walk with more stability and control. Cameron got to pick the colors/design for the brace, and he chose to have American Flags all over it….very patriotic, I must say!!
We see Cameron’s progress every day as he walks more and more, but it didn’t really hit me until last night, while having dinner with my family the Golden Lion (a local, beach restaurant), I reminded him of the times when he would always dance there. He remembered, but said to me “Yeah, but I can’t do that anymore”. I looked at him and said, “well, why not? Sure you can. Let’s go”. Much to my surprise he said “ok”! So, we cleared a path, walked out on that dance floor, and danced! He twirled me around, and I him, just as we did so many times before February 3rd, 2016. To me, it was a milestone that I will never forget!!
With all the progress that he has made, there has been a small, tiny bump in the road. Cameron is very independent, and when he wants to get up and walk, that is exactly what he does….even when we are not in the room with him. That being said, last week while his nana was in the restroom and I was walking our dog, Cameron tripped over his new leg brace (we had just taken it off), and fell and broke his wrist. Unfortunately, we could not tell the severity of the fall, because Cameron doesn’t have much feeling in his right arm. We thought it was simply a sprain. Well, we were wrong. A week later, x-rays showed a fracture across both bones in his right wrist. He will be seeing the orthopedic doctor tomorrow to have a cast put on for about 6 weeks. He is a trooper though! He knows that this is a mere inconvenience compared to all that he has been through. That being said, he is ready for his blue cast!!
The next step in Cameron’s recovery is an MRI, which is scheduled for later this month. The images will show us the current state of his AVM, and how much it has reduced in size (hopefully). This is standard procedure after the Gamma Knife Radiation surgery that he had back in June. If the AVM continues to shrink, additional surgeries will not be necessary.
We all work very hard to care for Cameron. His school, therapy, and doctor schedule is very rigorous and demanding, not to mention the countless hours spent trying to make sure that we have everything on schedule and nothing “falls through the cracks”. My mother has been a life-saver throughout this entire journey, and I absolutely could not do this without her. I am extremely lucky to have the family that I do, and a mother who is so devoted to her child, that she literally devotes 90% of her time to the well-being of her grandbaby. BIG, BIG thanks to her and all that she does for me and my son. I am the mother I am, because of the way she was a mother to me. J
Thank you all for your continued Love and support. I hope everyone is happy and healthy!
Hello All! We have made it to surgery week! This week is going to be a very busy one for Cameron and all of us who care for him. We are not slowing down on therapy, even though he has surgery on Thursday. He has therapy scheduled for today, tomorrow, and Wednesday. Speaking of therapy…Cameron is absolutely blowing me away! I cannot express in words just how proud I am of the man that I have made. We have been trying to wait patiently on his gait trainer and stander to arrive, but there seems to be no end in sight to the wait. So, I took matters into my own hands this weekend and decided to just buy him a regular, standard walker from Walmart, with the hopes that he might be able to just use it, instead of some big fancy gait trainer with all types of harnesses and straps. And let me tell you…he definitely can! I took him with me to buy it, and he was very excited about it. As soon as I got it put together, even though he was very tired, he wanted to try it out. Once we got him stood up and his hands positioned on the handles, he started taking his first steps. Very slowly and carefully, he walked to the front door of our home with minimal assistance from me. He took a short rest on the built in seat of the walker when we got to the door, and then he walked back to the couch…this time with less assistance. When we got to the couch, he took his own steps turning himself around and, holding onto the handles of the walker, he sat himself down on the couch!!! I tried explaining to him that this was a HUGE milestone, and he should be very proud of himself…however, the short little trip to the door and back wore him completely out, and all he wanted to do was rest. So he did, and my mother and I just couldn’t stop talking about how amazing he is.
All that being said, I’m going to have a little “proud mommy rant”…I hope you all don’t mind! I know I say all the time how proud I am of Cameron and how I couldn’t have asked for a better child, but for those of you who do not know Cameron personally, I’m going to give you some insight into his amazing personality. Yes, Cameron had something awful happen to him, and he has worked so hard to get to where he is after only four months, but there is so much more that I am proud of beyond what people read about on our social media sites. Cameron has never once complained, cried, whined, or showed any ounce of fear from his condition or how his life was so radically changed in the blink of an eye. In just the opposite, he has embraced it! He gets up every morning, with a smile on his face, humor on his tongue, and determination in his heart. I was worried, at one point, that I may not ever have “my Cameron” back. The one who told the silliest jokes…the quirky one who went to the beat of his own drum…the “Mathematician”…the sweet and loving Cameron who always thought of others first. But I no longer worry about that, because I see him coming back to me more and more with each day. He keeps us all laughing with his witty comments and his extremely bright mind. He has every right to feel sad, mad, envious of other kids, etc…but he chooses not to. He chooses to be thankful and enjoy life in any way that he can. THIS is why I am proud of my son. I’m proud of his soul. I’m proud of his heart. I’m proud that he accepted something awful, and turned it into a picture of hope and strength…all the while providing an example to us all on how to live the life you are dealt with dignity and perseverance.
End of “proud mommy rant”, thank you all for listening! Until Thursday, take care and be thankful!
Cameron and his family lived in the same condo building as us for years! I will always remember him scootering around outside! Our family calls him Scooterboy! We are so saddened to hear of this terrible news about him. Our family is praying for you and your family,"Scooterboy.".
Thank you for the update .
Thank you for sharing an update!! He is in the thoughts and prayers of so many...so happy to hear how well he is doing! Bummer about the wrist...but everything else sounds awesome...so happy to hear you got a dance!!
Great to hear the progress Cameron is making! Particularly impressed with the dancing at the Golden Lion. Keep it up and God Bless you Cameron.
Hi Cameron's family. I was writing to ask how Cameron is doing these days. Hoping all is well keeping you in my thoughts and prayers.
Thanks for updated, Cameron is the first thing i look in my email... im glad everything is improving...god bless you Cameron and god bless your mom...
What wonderful news - prayers answered indeed -keep going - we're all rooting for you
God bless you handsome!
Jayden is very happy that Cameron loves "Digger" and read your message. We think about him everyday :)
Our group, Angel Planes, is ready and able to fly Cam and a caregiver/ parent, commercially to a treatment or surgical center for a cure or rehab. Please get in touch with me via Facebook. We are located in Palm Coast, FL and saw the article in the PC Observer this morning. If you go to the air care alliance website, there is help for transportation and our contact information.
Keep on smiling Cameron!
We are all praying for you Cameron here at Grace Episcopal Church.
We are so sorry. We will absolutely be praying a lot. We had a men's group tonight for Bible study and we prayed for cam and I didn't even know it was him. They didn't know his name they just knew what happened from his school. If we can do anything to help please call us
We will pray for you and your family.