From the time Janet was around four months old, she has had complex (and at times perplexing) medical issues.
She has a host of medical anomalies. She receives medical care at St. Louis Children's Hospital (Departments of Pediatric Neurology, Genetics and Endocrinology). She is currently listed as "failure to thrive". You can only imagine how discouraging it is to have a sick child, but not be able to properly diagnose what is causing the challenges.
All specialists who have seen Janet agree there is something going on, but cannot pinpoint what exactly is wrong. She is characteristic of multiple diseases and syndromes, but not all inclusive of any one in particular. Janet needs a sophisticated test called a Chromosomal Microarray to better pinpoint what is going on with her genetically. This will assist her medical team in coming up with a treatment plan to help her grow and thrive.
All doctors who have examined and followed her have noted the medical necessity of this genetic testing, but unfortunately Janet’s insurance has become troublesome. It IS a covered benefit that they will pay for to CONFIRM a diagnosis, but not one they will pay for to GET a diagnosis. Ridiculous.
They view this test as a “stab in the dark” sort of approach, and will not cover it. Neither doctor has been able to diagnose a single syndrome, as her features, delays and medical “issues” do not fit neatly into one specific grouping.
Every time her doctors open up the scope to hopefully get a grasp on the bigger picture, something new seems to join and make them look in different directions. So, in lieu of this testing, her family is forced to hurry up and wait, praying first for healing, and second that no other shoes drop – and nothing worse happens to force the (insurance) issue.
We want to provide this family with every tool available to help Janet. Every dollar that you donate to this cause will go directly to the cost of the testing she needs.
Let's roll HopeMob!