Hi friends.We never thought it would come to this, but here we go:
As some of you may know our daughter Eliana was born in February and ended up in the nicu for 6 weeks due to feeding difficulties. While she was there she went through loads of testing and everything came back negative except for a minor (but significant) finding on the MRI. At this point the doctors are fairly certain that Eliana has some sort of rare disease of the white matter of the brain. They do not know if will get worse, improve, or stay the same. Theyve already tested for some serious ones but thankfully those have come back negative. They have pretty much ruled out annything known that would cause this. The next step is something called exome/genome sequencing which is a very new technology that tests all of her genes. It's a long and expensive process. Thankfully Eliana is, as of now, not in any immediate medical danger, although her development and level of alertness is not what it should be. Unfortunately this means that insurance won't cover it. The positive of having this done is that if there is some sort of finding of something rare caused by let's say some enzyme deficiency or anything like that they CAN treat her in some cases and progress can be made. But the sooner the better because as a baby her brain is developing rapidly now and early intervention is key. We have had some expenses already that have made a dent, and will likely have many more expenses in the future (as of right now the only thing we know for sure is that Eliana will likely be severely visually impaired. We don't know yet how severe, and we don't know yet what and if there will be other disabilities. It is a waiting game.) Just to be clear; if we knew with certainty that this test would give us answers we'd delve into the financial recources we have in a second. But the truth is is that this really may not give us any answers and then all that money that could have gone to Eliana for extra therapy is gone.We figure that if our loved ones (or whoever else is reading this) all give a little than the financial risk is a little less severe.
Thank you all for your friendship,love and support.
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