The Supreme Court’s Decision: Impact on the Rare Genetic Disease Community
<p>Iam the father of a child suffering from a severe degenerative genetic disease; a disease which carries a constellation of medical complexities, a terrifying disease with no treatment or cure. I am so scared.</p>
<p>We worry about every medical piece of her genetic puzzle, each of which catastrophically collides into one little girl’s body and brain. My paternal heart breaks more and more with every moment that passes without treatment.</p>
<p>As I watch her get older the fear of Susannah’s future is completely overwhelming, and the mountain of change feels steeper and steeper with every setback. Birthdays become more of a relief than a celebration because time is as much our enemy as nature. While her level of cognition is stagnant, our amazingly brave and joyful eight-year-old grows into her female body.</p>
<p><a href="https://lukerosen212.medium.com/the-supreme-courts-decision-impact-on-the-rare-genetic-disease-community-f9ac22bd1411"><strong>Read More</strong></a></p>