This Is Our Daughter's Story - by Leslie Leber

Hello TS Community! We have been members of TSSUS for over ten years and by sharing our daughter’s story, want to pass on the support and encouragement we have received in hopes it helps others. Our daughter Sara was diagnosed at age 7 with classic Turner syndrome (TS) when she fell off the standard growth charts. She received growth hormone shots for 8 years and achieved a height of 5'2". Shots were daunting at the beginning, but she says she is very glad she stuck with them.

During her latest routine MRI, it was discovered she has a congenital heart condition called PAPVR to monitor, demonstrating to us how important it is to have physicians who know the TS body, as previous testing had not shown any issue.

Sara was a good student through high school, was a member of the National Honor Society, and played trumpet in the marching band. Sara followed guidance from Dr.  Dean Mooney that we heard at the TSSUS conference. She  picked a college and lived on campus at a school 40 minutes away from home; far away enough to be independent but close enough for us to run up in the evening if needed.

It was a great coincidence at college one evening during dinner, when she and one of her closest friends discovered they both have TS while discussing similar upcoming medical tests. Her friend had never met anyone with TS before, and it was great for both of them to have a TS sister close by.

We are so proud to share that Sara graduated with TWO bachelor’s degrees plus a minor from Carthage College in Kenosha, Wisconsin this May. She earned her degrees in History and Data Science plus a minor in Spanish. And yes, Data Science is a math degree!

Sara has attended the TSSUS National Turner Syndrome Conference since age 13. We are so very grateful for the friends she has made as well as the parent connections we treasure because of our conference experiences and are looking forward to seeing everyone again in July in Portland!