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A Father's Inspiration


Several years ago, our daughter Berlyn, was diagnosed with TS. This of course was a great shock to us at first and created a tremendous amount of confusion, stress and anxiety. My wife and I had never heard of Turner syndrome before Berlyn’s diagnosis, so this was something very foreign to us both, and we did not know what would lie ahead.

Our foremost concern was for Berlyn, and any major ongoing health concerns and obstacles we would face as we would take the TS journey together as a family. We always knew that she was a very special girl regardless of any diagnosis. She has an enormous personality, is a spit fire, and touches the heart of everyone she comes into contact with.

Before she was diagnosed with TS, there were a few signs that she was definitely unique. Shortly after she was born, we found out that she had aortic stenosis and needed an immediate medical procedure in order to open her aortic valve. With God’s blessing, everything went as planned and she has been thriving ever since. As she grew older, we would notice subtle things like she struggled in math, coordination, and she wasn’t growing as fast as other girls. However, should would excel in other areas such as her memory, personality, singing, and warm kindness to others, so nothing seemed out of the ordinary.

As we learned more about TS, the pieces started to come together, and we determined that the diagnosis was very accurate. At the time there was very little information available about TS until we discovered the Turner Syndrome Society (TSSUS). TSSUS has been a tremendous resource for our family and has allowed us to learn more about Turner syndrome and connect with other families in a similar situation. Having a daughter with TS has not been a limitation to anything we do as a family and has actually been a tremendous blessing in our lives.

Both my wife and daughter have been huge inspirations to other girls and women with TS by connecting with them and sharing Berlyn’s story through social media and local groups. We have already meet so many wonderful families and built long lasting friendships because of this journey. At this point, our daily lives run so smooth that I often forget that Berlyn has aortic stenosis or TS for that matter. She wrestles and plays sports with her brothers, sings and dances, and does everything else a growing girl does.

For anyone diagnosed with TS or any family affected, just know that you are not alone! There is nothing in life that can hold you back from doing and being all that you want to be. TS should not be thought of as any type of hindrance, but is something that makes you even more special and unique.

Our Berlyn is a beautiful butterfly and I wouldn’t change her in any way.

 

Additional Resources

Download the Clinical Practice Guidelines for the Care of Girls and Women with Turner Syndrome

Download the patient / family friendly version of the Clinical Practice Guidelines for the Care of Girls and Women with Turner Syndrome

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