Action | Amend regulations based on recommendations of VA Genetics Advisory Committee |
Stage | Proposed |
Comment Period | Ended on 9/12/2014 |
I have dear friends who lost one child due to a lack of screening, and almost lost another. Only through traveling to another state and putting forth some very drastic expense for bone marrow transplants were they able to save the life of their second child born with SCID. These amazing parents have made a conscious decision to have no more children because they can't bear again to go through the heartbreak they've endured for two children. This is a simple test. My heart breaks to think about the parents out there who could lose a child due to ignorance of their child's propensity for this condition, when screening could easily educate them. I'm a very fiscally conservative person, but I would be more than happy to earmark my tax dollars for screening.