As a parent of a child with Loeys-Dietz syndrome type 2 you never know what the next day is going to bring.
From the time I was five months pregnant I was told that Logan would not survive once he was born because they could not tell me what was wrong with him. Watching him grow and knowing that he was different made it hard on me as a parent.
Logan’s Loeys-Dietz Syndrome Diagnosis
Finally in October 2018 we were told that Logan had Loeys-Dietz syndrome type 2 and I did not know how to react especially since I had no idea what it was. How was I going to explain this to Logan and his older brother Ryan and younger sister Kaylee as well as everyone else?
After the research and meeting with his doctors I realized early on that the syndrome is one that you must stay on top of and make sure that the medications are given and the testing is done and you always follow up with your doctors.
Persevering with Loeys-Dietz Syndrome
I understand now that every case is different and as Logan gets older his syndrome may affect him differently. Some days the pain and discomfort are harder than others. Even though he has limitations I will not allow him to say no and he cannot do it when I know he can. One thing I learned from this is that with life comes adjustments and uncertainty, but as long as you are one step ahead you will persevere and have no regrets. #LDSWARRIOR
For more Loeys-Dietz syndrome stories like Kimberly and Logan’s, click here.
Find Help with LDS
To find peer support and information on LDS resources, contact us. If you are a parent of a child with Loeys-Dietz syndrome, we can offer you information on caregiver and pediatric resources.