I had several thoughts for a post tonight. The topics were interesting enough, and as usual, I had quite a bit to say. While juggling the topic ideas in my head, I decided to browse Facebook. Then it become apparent what I needed to write about.
Many of my posts in some way or another connect with my family’s experiences with Loeys-Dietz Syndrome. It’s not as if every day this syndrome overtakes my thoughts constantly, but it is there. It certainly has a prominent role in our lives for better or for worse.
Truthfully, as many challenges as we have faced, I am reminded that it can always be worse. To look at my son, one would never know the health issues he faces. He is on par with his classmates, has few modifications at school, he is active on social media, loves sports, gets sassy with his parents, and would sleep until noon if I let him. He has evaded the major heart and vascular surgeries at this point that many others with the same diagnosis face at very young ages.
That’s not to say he has been without struggles. And he will face struggles in the future. If you’ve read my blog at all, you know that already. However, it is tempting in good and stable times to forget the seriousness and potential for a catastrophic health crisis Loeys-Dietz brings. Until ….
A handful of people (some of which are children) in our Loeys-Dietz community have had open heart surgery in the last week. And three people…..one of which was a Loeys-Dietz Syndrome Foundation board member….. passed away this week from complications related to LDS. Within the last three months I cannot keep count of members in our rare disease community that have died. One was a board member. One was the daughter of a board member.
These beautiful people were loved by their family and friends. Many of them helped to bring awareness of the connective tissue disorder and helped to provide support and/or funds to push forward research. Outside of a Facebook connection and a conversation at one of the LDSF conferences, these were not people that I knew well. However, they were all fighters and the world is undoubtedly sadder without them. And I am reminded of why I share my family’s anger, joy, pain, and fears in this journey with Loeys-Dietz Syndrome.