Jaden's Diagnoses
Jaden is my precocious, hyper active, absolutely adorable five year old boy. Often described as the happiest, most loving boy in the world, he has a huge heart and always has a smile and a hug for everyone he meets. That said, Jaden is non-verbal and relies on sign language to communicate, which causes frustration when he can't get his point across. While his verbal, fine motor and social skills are severely delayed, Jaden's gross motor skills are developing well, providing him with a love of all things physically active. Like most five year olds, he is mischievous and rebellious, constantly testing his boundaries. Unfortunately, he has little concept of consequences, and seems to forget their attachment to his behavior. His attention span is extremely limited and it is often painful to watch him struggle to process stimulus in new situations.
As you can tell, Jaden has "special needs". If I had a penny for every person who asked me what his diagnosis was, I'd be able to afford to have him diagnosed. At this point, the only diagnosis we have is a "global developmental delay, otherwise unspecified". What does that mean? I still don't know. We have worked with his pediatrician, hearing specialist, pediatric neurologist, speech therapist, occupational therapist, behavior therapist, regional center and respite center to help him get the support he needs. Here is what we have ruled out so far: Autism, visible brain abnormalities, chromosomal anomolies, protien deficiencies, any other diseases/disabilities readily detected by an initial neurological exam and blood work. So, we have a list of what we are NOT dealing with. What ARE we dealing with??
That is where I need your help. Jaden's pediatrician referred us to a pediatric neurologist about a year ago. Jaden is on Medi-Cal and his "preexisting condition" has made him inelligible for private insurance. When the Covered California (ACA) website went up, I began searching for insurance on there because I was informed he couldn't be denied for his preexisting condition. Well, instead of being denied for that, he is ineligible because he qualifies for Medi-Cal. I can't buy my son better insurance and Medi-Cal does not cover the diagnostic testing I need to find the answers we are searching for. After just two office visits and a lab test, we are approximately $2000 in debt to the pediatric neurologist. We even had Jaden's blood drawn for a second battery of tests only to find out that it would cost $3000 out of our pockets to run the labs for the results. We simply can't afford it.
If the $3000 blood tests come back inconclusive, the neurologist has referred us to a genetisist for further testing. If those tests come back inconclusive, the neurologist needs to run an MRI on Jaden, which would mean putting him under anesthesia. All of these tests come at extreme costs that are so far out of our budget, that we don't know what to do.
Furthermore, Jaden's behavior has gotten to the point of being dangerous, due to his frustration and lack of support. He is extremely non-compliant and struggles with anxiety and inappropriate affect. His sleep patterns are to the point of driving our family to implode. The pediatrician has referred us to a pediatric psychiatrist who specializes in non-verbal children, but again we don't have the funds to pay them.
No one ever wants to ask for help, but I am beyond pride. My family needs help. We can't do this without a better understanding of what our son is going through. He is frustrated and confused, and so are we. I guarantee that 100% of the funds raised will go toward paying his medical expenses. I am committed to updating this page every time I have new information. I just want to help my baby. Please, PLEASE help me to do that.
Thank you.
