Story about Klippel-Trénaunay-Weber Syndrome .

Ian's day of birth

Oct 21, 2016


Ian is my 12 year old son who was born with KTS. 

We live in a very small town in Northwestern Minnesota. The Drs here have never heard or seen anything about this syndrome ever. The doctor was so concerned about it that he was actually panicking. As long as he was breathing I didn't care. I mean it didn't worry me. We were sent to different doctors to try and figure out what to do. Ended up having laser surgery when he was 6 months old. Didn't take away or minimize the appearance of the marks. His whole left half of his body, back down to the tips of his toes and exactly half of his penis and scrotum are affected. He now has varicose veins as well as pitting in the affected leg so we are headed to the Mayo Clinic in Rochester, MN in December to see vascular specialists. My main concern is that it has affected his ability to have children. I hope this is not the case and I better not learn until later in life. Lol

This has been our journey so far

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