Oliver Cason and Family
Donation protected
Oliver Cason, not even 6 months old yet, is suffering from an extremely rare new disease (Only 132 cases ever as of Dec, 2016) called Acute Flaccid Myelitis that is affecting the nervous system, particularly the spinal cord, of this beautiful happy baby boy. Please help support the family while they are with him for the next month or so in Jacksonville, Florida. While there they will have to pay out of pocket expenses for food and lodging and gas to drive the two hours home (back and forth as they balance spending time with their other son as well), and miss time at work. Your donations will help to allow them to focus solely on the health of their youngest son!
The Story (as told by their parents, Andrew and Jennifer Cason):
Thursday (Feb 16) was like any other day in our house. Happy and playful. I posted a short video of Oliver bouncing in his bouncer while his big brother Aaron showed him his fire trucks. I watched them taking in the simple joy of brotherly love. Loving the opportunity I have to be at home with my boys and watch these moments that so many men miss with their children. Jennifer worked that night at the hospital she's a nurse at SGMC, loving her job. Things seemed like the perfect American dream.
On Friday (Feb 17) morning when Jennifer got home from work, we went to wake up Oliver like any other morning, except when we picked him up he was abnormally limp. He had no bowel movement on Thursday and I explained this to Jennifer, so we began our assumptions that he must not be feeling well. I went to do my workout at the gym and Jennifer stayed up with Oliver and held him until I got back home, about an hour later. Upon arriving home, I noticed he still was not acting quite like himself. He had a wierd cry, his breathing was strange and he just could not hold himself up. Jennifer went to sleep because she had been up all night working and told me to call the doctor if he didn't improve or got worse. After about 15 minutes of holding his completely limp body, I knew something just was not right. I tried sitting with him on the floor and he just fell over. I even put him in his Bumbo for the added suppport and he could not hold his body up. This is when I knew that we needed to act fast. I had this gut wrenching feeling that something really terrible was wrong with him, so I immediately woke Jennifer from her short nap and showed her what was going on while I reached his Pediatrician. We threw everything together as fast as we could and got to her office. She immedietely admitted us to the hospital. After running a few tests and having breathing treatments we were informed by the Pediatrician that his condition was more serious than his bowels and would need to be transferred to a hospital more equipped to handle Hypotonia (his original diagnosis). After speaking with a Neurologist they informed us were were being accepted and admitted to Wolfson's Children's Hospital in Jacksonville and the ambulance was on the way to take Oliver down.
At this point Oliver had gained some of his muscle tone in his arms and neck back, but his legs still showed no signs of movement except upon touching the bottoms of his feet, he would flinch just a little bit. After the ambulance arrived we got in our car and drove down to Jacksonville. We only beat them there by 5 minutes so when we got up to the room they were wheeling Oliver in right behind us. They said he did great on the ride and was smiling. The team at Wolfson's came in and talked to us about what they were planning to do and immediately began working to accomplish that. He was poked and prodded all night and ended the night having an MRI of his head and cervical spine. They told us that the process would take about 2.5 hours and if we wanted to nap it would be a good idea. Jennifer had been up for 34 hours at this point. They brought Oliver back in from the MRI around 4:45 am. Around 10 am a Neurologist came to speak with us about the Radiologist's report. He informed us that what we were dealing with was a very rare disorder called Transverse Myelitis. He didn't want us to worry but we should expect to be here for at least a month and that the possibilities of improvement or worsening are unknown because no one really knows a lot about this disease and what causes it.
Later Saturday (Feb 18) they did another MRI of his entire spine. The drew more labs and took some of his spinal fluid.
Sunday (Feb 19) we spoke to the head of neurology. They have given an official diagnosis of Acute Flaccid Myelitis. We were told this condition is extremely new and was just discovered in 2012 but not recognized as an actual disease until 2014. As this is such a new condition not much is known at this time as far as treatment goes. It causes symptoms of a polio like nature and some speculation about Enterovirus 68 (which is in the polio family) possibly being a leading cause of this. We will be working closely with the CDC, the Health Department, multiple specialists, and the continued support of Wolfson's.
The MRI showed that he has inflammation of his gray matter in the spinal cord from his C-2 down to his T-5 vertabrae. This is a fairly large portion of his spine that is affected. Our next course of treatment is going to be an experimental form of Immunoglobulin therapy, that will hopefully boost his immune system and fight off the inflammation. We will also be stopping the steroid therapy as the CDC has found no benefit from continuing and believe it could potentially be harmful for this specific diagnosis.
All of that being said we are hanging in there. Jennifer was allowed to pick Oliver up for the first time all weekend around noon today and has not put him down. I'm very thankful to have her around to not only guide me through all of this but to be my rock when I felt like all hope was lost. We still have a long road of recovery ahead but with continued support we believe we can and will make it. Thank you to everyone that has called or sent messages. Thank you for the prayers. We are not out of the water yet so please keep them coming. Pray for Ollie. Pray for his big brothr Aaron who is not old enough to understand what is going on and why Mommy and Daddy are gone. Pray for Jennifer and I's continued strength so we may be strong shoulders for each other and for our children.
The Story (as told by their parents, Andrew and Jennifer Cason):
Thursday (Feb 16) was like any other day in our house. Happy and playful. I posted a short video of Oliver bouncing in his bouncer while his big brother Aaron showed him his fire trucks. I watched them taking in the simple joy of brotherly love. Loving the opportunity I have to be at home with my boys and watch these moments that so many men miss with their children. Jennifer worked that night at the hospital she's a nurse at SGMC, loving her job. Things seemed like the perfect American dream.
On Friday (Feb 17) morning when Jennifer got home from work, we went to wake up Oliver like any other morning, except when we picked him up he was abnormally limp. He had no bowel movement on Thursday and I explained this to Jennifer, so we began our assumptions that he must not be feeling well. I went to do my workout at the gym and Jennifer stayed up with Oliver and held him until I got back home, about an hour later. Upon arriving home, I noticed he still was not acting quite like himself. He had a wierd cry, his breathing was strange and he just could not hold himself up. Jennifer went to sleep because she had been up all night working and told me to call the doctor if he didn't improve or got worse. After about 15 minutes of holding his completely limp body, I knew something just was not right. I tried sitting with him on the floor and he just fell over. I even put him in his Bumbo for the added suppport and he could not hold his body up. This is when I knew that we needed to act fast. I had this gut wrenching feeling that something really terrible was wrong with him, so I immediately woke Jennifer from her short nap and showed her what was going on while I reached his Pediatrician. We threw everything together as fast as we could and got to her office. She immedietely admitted us to the hospital. After running a few tests and having breathing treatments we were informed by the Pediatrician that his condition was more serious than his bowels and would need to be transferred to a hospital more equipped to handle Hypotonia (his original diagnosis). After speaking with a Neurologist they informed us were were being accepted and admitted to Wolfson's Children's Hospital in Jacksonville and the ambulance was on the way to take Oliver down.
At this point Oliver had gained some of his muscle tone in his arms and neck back, but his legs still showed no signs of movement except upon touching the bottoms of his feet, he would flinch just a little bit. After the ambulance arrived we got in our car and drove down to Jacksonville. We only beat them there by 5 minutes so when we got up to the room they were wheeling Oliver in right behind us. They said he did great on the ride and was smiling. The team at Wolfson's came in and talked to us about what they were planning to do and immediately began working to accomplish that. He was poked and prodded all night and ended the night having an MRI of his head and cervical spine. They told us that the process would take about 2.5 hours and if we wanted to nap it would be a good idea. Jennifer had been up for 34 hours at this point. They brought Oliver back in from the MRI around 4:45 am. Around 10 am a Neurologist came to speak with us about the Radiologist's report. He informed us that what we were dealing with was a very rare disorder called Transverse Myelitis. He didn't want us to worry but we should expect to be here for at least a month and that the possibilities of improvement or worsening are unknown because no one really knows a lot about this disease and what causes it.
Later Saturday (Feb 18) they did another MRI of his entire spine. The drew more labs and took some of his spinal fluid.
Sunday (Feb 19) we spoke to the head of neurology. They have given an official diagnosis of Acute Flaccid Myelitis. We were told this condition is extremely new and was just discovered in 2012 but not recognized as an actual disease until 2014. As this is such a new condition not much is known at this time as far as treatment goes. It causes symptoms of a polio like nature and some speculation about Enterovirus 68 (which is in the polio family) possibly being a leading cause of this. We will be working closely with the CDC, the Health Department, multiple specialists, and the continued support of Wolfson's.
The MRI showed that he has inflammation of his gray matter in the spinal cord from his C-2 down to his T-5 vertabrae. This is a fairly large portion of his spine that is affected. Our next course of treatment is going to be an experimental form of Immunoglobulin therapy, that will hopefully boost his immune system and fight off the inflammation. We will also be stopping the steroid therapy as the CDC has found no benefit from continuing and believe it could potentially be harmful for this specific diagnosis.
All of that being said we are hanging in there. Jennifer was allowed to pick Oliver up for the first time all weekend around noon today and has not put him down. I'm very thankful to have her around to not only guide me through all of this but to be my rock when I felt like all hope was lost. We still have a long road of recovery ahead but with continued support we believe we can and will make it. Thank you to everyone that has called or sent messages. Thank you for the prayers. We are not out of the water yet so please keep them coming. Pray for Ollie. Pray for his big brothr Aaron who is not old enough to understand what is going on and why Mommy and Daddy are gone. Pray for Jennifer and I's continued strength so we may be strong shoulders for each other and for our children.
Organizer
Andrew Cason
Organizer
Valdosta, GA
