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&rsquo;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&rsquo;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>
Tags: Rare Genetic