So I’m sitting in a hotel room after a long day of escorting my son to medical appointments. Once I had the opportunity to rest and catch up on some work, I took a moment to glance through Facebook. I saw updates from the family of a lady I met this summer at the Loeys-Dietz Syndrome Conference, Deeba Zaidi. Deeba passed away after heart surgery connected to Loeys-Dietz Syndrome. Another family I have gotten to know through LDS conferences and Facebook had posted an update from their daughter’s surgery. The sweet little girl had orthopedic-related surgery connected to her LDS diagnosis. She has had to extend her stay in the hospital due to complications of the surgery.
And this is why I’m sitting in a hotel room missing a week of work while my son misses a week of school. Reading this makes it all so real. This is why we travel to Maryland to be at the hub of all the research on this dangerous and unpredictable disorder. This is why I signed my son up to be a “human guinea pig” as some have said and have him involved in research at the National Institutes of Health.
The life expectancy of one with Loeys-Dietz Syndrome has improved considerably since the disorder was first described in 2005. It is hopeful. It is encouraging. But it is easy to become complacent. It is easy to relax. It is easy to forget how important regular scans, consistent medication, preventive measures are. And then you see messages on FB of little girls who have difficulty healing or vibrant women who have passed away.
So tomorrow I will update with all the many visits and the bucket loads of information we gained today, but tonight I’m going to hug my 15 year old son….even if he resists. And I’m going to be so thankful for the amazing medical professionals and the Loeys-Dietz Syndrome Foundation members that work relentless to provide research, care, and support for my son and others like him. And finally, I’m going to say a little prayer tonight for the family of Deeba and Caroline, and I hope you will, too.