As most of you know, Hannah’s upcoming medical treatments for life scare the heck out of me financially.
Not only do we have the stress of having the most severe form of Gaucher’s disease, regardless of type, but we also have the fear of type 3, one which will add neurologic problems and shorten Hannah’s life expectancy dramatically. Because presentation of GD is so rare in newborns, we are in somewhat unchartered territory, and because it is such an extremely rare disease, there isn’t a lot of information out there to compare against.
Putting all that aside, Hannah’s Cerezyme treatment is going to help us try and keep away the physical symptoms of GD…bone crises and bone death, growth retardation, severe pain, compression of the lungs, and more. But Cerezyme is considered one of the most expensive drugs in the world. Hannah will need this drug, as well as other therapies, procedures, and surgeries for the rest of her life. I’m not going to rant about this again. You all know how I feel.
Tammy, Parker’s Mom, is dealing with similar financial issues and hoping that insurance and medicaid will help provide those life-requiring treatments for her beautiful boy.
But her representative, Utah’s John Douglass, has championed legislation that disabled the Disabled Tax exemption. Mr. Douglass — what the hell are you thinking?!? Tammy mentions his “lack of compassion.” She is being too kind. The words I feel are much stronger, and they would probably require an R-rating, possibly an X-rating.
Take a moment to read Tracy’s letter. This is just beyond horrible… We need to fight ignorant people, especially politicians who are SUPPOSED to look out for the future of our children.
Thank you so much for helping spread the word about what is going on here in Utah. We are simply sick to our stomachs that or state would rip away funding from it’s weakest.