Saturday, August 8, 2015

newborn screen

NO state includes all 56 recommended potentially fatal, but treatable, diseases in its Newborn Screening Program. Not one. Not your state. NOT ONE.
IT IS PREVENTABLE. William could've been saved. Hundreds of babies COULD'VE been saved.
Friends and family,
Thank you. Without your support, we couldn't made it through this past year. Seriously. All the cards, phone calls, texts, visits, gifts, prayers...people say how strong Robert and I are, but essentially we are the product of the unwavering support unit we possess.
Now that William is stable, happy and comfortable, I am looking into the next course of action. One fire has been lain to rest, if you will, and now its time to tackle the next inferno.
Back in January and February, many of you filled out a course of action form from the Hunter's Hope website that educated and pleaded with your local legislatures to add Krabbe and other Lysosomal Storage Disorders to your respective state's newborn screen. I am asking a favor of you to follow up, if you haven't already, with these folks. Persistence in key, with our goal saving families and children from going through these heart-wrenching illnesses.
For my friends and family members that have had a baby, do you know exactly what your baby was tested for? All that's important is that the test came back normal, thank goodness. But what were they actually tested for? Not tested for?
Let's say your a mother- and father-to-be and you want more information on this testing. Just in case. YOU HAVE THAT RIGHT and you MUST be proactive. At the low cost to you of $40.00, you child will have the test, which tests for 60+ different diseases in addition to the normal test, and you will know within 3 days if your child has one of these hidden diseases. Why wouldn't you? Why didn't I? We weren't made aware and now I'm telling anyone willing to read this much on a Saturday afternoon. Recessive gene mutations make their ugly appearances one in a millennia. Our William....why are William. That is a question I do not dare to try and figure out, but it happened and we move on the best we know how.
Please help me by filling out this form. Its the first step. And if you already have and haven't heard back from the legislatures, do it again. And again. Don't give up, as you and we have not given up on our baby. Never give up.
Spread the word.

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