The story of Jessica
When we first received our diagnosis, when our daughter was 4 weeks old, we were beyond heartbroken. The life we had imagined was turned up-side-down. We felt every negative emotion. That was before we got to know our sweet little lady. Maybe it took a little extra time for us to learn how to bond with her, but once that bond was solidified, she has brought so much joy into our lives. She is almost 2 years old now. And, though there are trying times for sure, I wouldn’t change a thing about her or our lives. So, to all of those who are at the very beginning of their journey, I want you to know that you’ll adjust to the new normal and the despair will settle to a quiet calm. Here’s to hoping you can celebrate all of the joy your child brings during this year’s Rare Disease Day.