She has been diagnosed with hypotonia (low muscle tone), hypermoblity, poor consolidated sleep, moderate hearing loss, a small brain bleed (likely in uterine), epileptic activity, severe cognitive/fine motor/gross motor delay, non verbal with apraxia and recently a low grade brain tumor. Due to its location, it cannot be safely biopsied or removed. Ella faces life long brain scans several times a year.
The doctors at Boston Children seemed stumped as to how to connect the dots. We have been pushed into the direction of whole exome sequencing testing (also known as WES) for answers. There’s a good chance we could get a diagnosis here and be able to better understand and help Ella. There’s so many complications with her symptoms and her being non verbal.
The problem is her insurance denied the test, she was denied for state insurance yesterday and we cannot receive any grants or sliding scale for this. The test is $4,500 to have myself, my husband and Ella drawn. If any variants on here comes are found- we would have the ability to test her brother and sister for those gene variants at $200 per gene per child. It takes months to get it back because it’s such a precise test- we hate to wait even longer. We have paid so much out of pocket already for special seating, an adaptive stroller, more specialized equipment and their copays, deductibles, out of pocket private therapy, sign language instruction, leg braces, special adaptive clothing, etc. already this year alone.
On Saturday Dec 9th, I will be holding a cardio dance fitness class with an entry fee of donation to help offset the cost of this big genetic test. This will be from 9:30AM-11:00AM at Rock Your Body in Fremont, NH. All donations will be used solely for the genetic test.
Those unable to attend who would still like to donate- are welcomed to do so here.
Thank you all so much from the bottom of our hearts for taking the time out to read this and help us hopefully find some answers for our little angel Ella. No child should ever have to go through all of this.
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