Support for Caiden
Donation protected
8/15/14 Update:
On August 1st 2014, we found out after a routine MRI, that our two year old son Caiden, has a brain condition called Global Cerebral Atrophy that is responsible for his severe developmental delay (12+ months behind where he should be). His entire brain is smaller than it should be despite his large head circumference and Isn't expected to catch up to where it should be. His condition is something that's typically seen in people with Alzheimer's, MS or after a traumatic brain injury, yet Caiden has no history of illness or injury. The cause of this condition in his case, is as of now, unknown.
The condition has caused his brain to either stop growing, grow slowly, or shrink. Unfortunately the prognosis varies depending on cause and how exactly the brain is affected, so Caidens future is a mystery. We won't know if his brain is shrinking or still growing until his next MRI which he'll need to have repeatedly throughout his life to monitor his brain as it is considered brain damage. If it has stopped growing, he will likely stay around the development he's at now for life. If his brain is growing, but slowly, we need him to progress as far as he can before it does stop. If his brain has shrunk and continues to shrink, he will continue to regress and it will likely be terminal. Regardless, he is now at risk for seizures, cerebral palsy, dementia and aphasia.
Unfortunately, this is a symptom of something further, not an official diagnosis, so we are left with even more questions.
Treatment is symptomatic and supportive. In addition to this condition, Caiden also has hypotonia (low muscle tone), and is in the process of being diagnosed with Autism and sensory processing disorder. His doctor has ordered blood work to examine his DNA for possible genetic abnormalities that may be responsible for the state of his brain, including a condition known as fragile X syndrome. We are waiting on referrals to a neurologist and a geneticist.
Caidens life has quickly become a never ending stream of doctors appointments and therapies, all geared towards helping him lead as normal a life as possible.
At the present time, Caiden is mostly nonverbal, meaning he has few words, doesn't speak often, and when he does its not in a communicative way. He mainly babbles, with only the abilities of a one year old. He cannot kick a ball or use silverware, and leaving the house is an ordeal. He cannot handle being brought out to do simple things such as grocery shopping or even going to a public playground. He has violent and explosive meltdowns that put both himself and others at risk for injury with no apparent triggers.
The therapy and testing he needs is extensive. Unfortunately, insurance has not only denied Important blood work (with an out of pocket cost reaching $2,000), but also feels the amount of therapy requested by his doctor, is "unreasonable" and only approved him to have therapy for 4-6 weeks. If they do not change their decision, we could be looking at hundreds of dollars in out of pocket costs per appointment. Caiden can't afford to go without therapy.
What your donation is funding:
When we began this fundraiser, it was solely for the cost of a second car. Our family only has one income, as I am unable to return to work due to the Intensity of Caidens needs. We also only have one car, which my husband uses for work in another city, working long past normal business (and doctor's) hours. We will be unable to get Caiden to a majority of his appointments unless we can purchase a second car, specifically for his transportation.
Unfortunately, due to said insurance issues, the money raised will now have to be split between the cost of therapy and the tools needed for it, blood work and car expenses.
Caiden is a loud, happy little boy, with a love of books and balls who has overcome prematurity, and now faces a lifetime of disability. He has an extraordinary ability to make everyone smile and hearts melt. We want him to have the best possible future, and to make that a reality, we need a bit of help. Every donation, no matter how small helps.
On August 1st 2014, we found out after a routine MRI, that our two year old son Caiden, has a brain condition called Global Cerebral Atrophy that is responsible for his severe developmental delay (12+ months behind where he should be). His entire brain is smaller than it should be despite his large head circumference and Isn't expected to catch up to where it should be. His condition is something that's typically seen in people with Alzheimer's, MS or after a traumatic brain injury, yet Caiden has no history of illness or injury. The cause of this condition in his case, is as of now, unknown.
The condition has caused his brain to either stop growing, grow slowly, or shrink. Unfortunately the prognosis varies depending on cause and how exactly the brain is affected, so Caidens future is a mystery. We won't know if his brain is shrinking or still growing until his next MRI which he'll need to have repeatedly throughout his life to monitor his brain as it is considered brain damage. If it has stopped growing, he will likely stay around the development he's at now for life. If his brain is growing, but slowly, we need him to progress as far as he can before it does stop. If his brain has shrunk and continues to shrink, he will continue to regress and it will likely be terminal. Regardless, he is now at risk for seizures, cerebral palsy, dementia and aphasia.
Unfortunately, this is a symptom of something further, not an official diagnosis, so we are left with even more questions.
Treatment is symptomatic and supportive. In addition to this condition, Caiden also has hypotonia (low muscle tone), and is in the process of being diagnosed with Autism and sensory processing disorder. His doctor has ordered blood work to examine his DNA for possible genetic abnormalities that may be responsible for the state of his brain, including a condition known as fragile X syndrome. We are waiting on referrals to a neurologist and a geneticist.
Caidens life has quickly become a never ending stream of doctors appointments and therapies, all geared towards helping him lead as normal a life as possible.
At the present time, Caiden is mostly nonverbal, meaning he has few words, doesn't speak often, and when he does its not in a communicative way. He mainly babbles, with only the abilities of a one year old. He cannot kick a ball or use silverware, and leaving the house is an ordeal. He cannot handle being brought out to do simple things such as grocery shopping or even going to a public playground. He has violent and explosive meltdowns that put both himself and others at risk for injury with no apparent triggers.
The therapy and testing he needs is extensive. Unfortunately, insurance has not only denied Important blood work (with an out of pocket cost reaching $2,000), but also feels the amount of therapy requested by his doctor, is "unreasonable" and only approved him to have therapy for 4-6 weeks. If they do not change their decision, we could be looking at hundreds of dollars in out of pocket costs per appointment. Caiden can't afford to go without therapy.
What your donation is funding:
When we began this fundraiser, it was solely for the cost of a second car. Our family only has one income, as I am unable to return to work due to the Intensity of Caidens needs. We also only have one car, which my husband uses for work in another city, working long past normal business (and doctor's) hours. We will be unable to get Caiden to a majority of his appointments unless we can purchase a second car, specifically for his transportation.
Unfortunately, due to said insurance issues, the money raised will now have to be split between the cost of therapy and the tools needed for it, blood work and car expenses.
Caiden is a loud, happy little boy, with a love of books and balls who has overcome prematurity, and now faces a lifetime of disability. He has an extraordinary ability to make everyone smile and hearts melt. We want him to have the best possible future, and to make that a reality, we need a bit of help. Every donation, no matter how small helps.
Organizer
Amanda Burger
Organizer
