Utah mom offers hope to families dealing with a devastating health condition


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Updated: 8/27/2009 9:47 am | Published: 8/26/2009 9:45 pm
Reported by: Nicea Degering
(ABC 4 News)
(ABC 4 News)
SARATOGA SPRINGS, Utah (ABC4 News) - For expectant moms, it's one of the most common causes of miscarriage, but many women know nothing about it.  Turner Syndrome, the diagnosis can be devastating for families, but now one Utah mom is trying to offer hope.

Her daughter, Meghan Stevenson, sounds like a typical teenager.  She likes make-up and the Jonas Brothers, but says this is what makes her happy:

"When my friends tell me that I'm unique and I'm special and I'm not like many girls," Meghan says.

What Meghan has lived with her entire life is anything but typical.  Meghan has Turner Syndrome.  She is missing an X chromosome.  She was diagnosed when her mother Sarah was twenty weeks pregnant.

"It was like, I have no idea what that is and I was in such shock when they told me.  And what they did tell me, I didn't comprehend what they were saying," Stevenson says.

Turner Syndrome affects only females and can mean short stature, infertility and sometimes heart and kidney problems.  For pregnant moms, seventy-five percent of the babies are stillborn.  But Meghan survived.

"All through the pregnancy, all I kept thinking was I just want to hold her once.  Whether she was alive or not made it to term, I just wanted the opportunity to hold her once.  When that experience came true I looked at her and thought, you are my little miracle," Stevenson says.

Sarah Stevenson has now written a book that started as a collection of journal entries, to give other families hope.  With Meghan's blessing of course.

"Honestly, I didn't know she was writing a book until she showed me the papers.  She published them and I said, cool!  I think it would be fun, so I let her publish it," Meghan says.

The book is about a little girl who while dealing with a tough condition has made everyone around her more compassionate and understanding.  And for those reading, this book has a happy ending.

"I hope it makes them feel that although things can be hard in life, sometimes those really hard things can be some of the greatest things in your life," Stevenson says.

There are about seventy-five thousand girls in the United States living with Turner Syndrome.  And there is a Turner Syndrome Society here in Utah.  If you would like more information call 801-766-9521 or go to www.turnersyndrome.org  You can find Stevenson's book at www.mapleleafcenter.com
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donnav - 12/31/2009 12:55 PM
I have a 14 month old daughter who has TS. She was diagnosed prenatally at 19 weeks. We were given the option of termination -- which I still don't understand why -- and asked to see a genetic counselor and another doctor. Thank GOD they gave us hope. Things did not look good but Ava is thriving. She has heart and kidney defects and lymphedema but all in all is a rock star! She is perfect! Thanks for putting your story out there!

LoriH - 9/4/2009 8:56 AM
I ha14 year old daughter with Turner Syndrome, she is truly our miracle child. I also found out when I was 20 weeks pregnant that she had TS, the options the genetic counselor gave me where to have a partial birth abortion, have her and give her up to the state or have her and keep her and face whatever was coming my way. I walked out of the office scared to death, never was abortion an option, luckily I contacted the Turner Syndrome Society and they were able to connect me to a family in Iowa, where we live, who put me at ease and told my about the wonderful journey I was going to embark in. My daughter has non verbal learning disability that can come with TS ut she has taught herself how to manuver around it and come out with all a's and b's, she warms the hearts of most adults who come into contact with her. She is my hero and I hope that newly diagnosed pregnant women would reah out to others, look into all options before jumping to abortion because they will be missing out on a truly remarkable miracle.If anyone ever needs to talk to someone call me, I will listen and never judge, 712 792 6819, IaMom

jeannedebroeck - 8/31/2009 8:06 AM
I have an 18 year old daughter who has TS. She, too, has exceeded every expectation we were given upon diagnosis.....she nine at the time. Currently she is a senior in high school, currently visiting colleges, has been a cheerleader, is on the gymnastics team, has an active social life, loves fashion, loves her friends, is a texting queen, plans on majoring in social work and then work at a Children's Hospital.....she wants to give back. She is a fabulous kid with a great head on her shoulders. She is also extremely compassionate, I think based on all she has gone through in life. Sure there have been bumps in the road but she says they have made her what she is today and will only help her in her future career. I love her dearly, but also admire her immensely!

laurafasciano - 8/29/2009 1:17 PM
Thank you for sharing your personal story. We will have copies on hand at our Turner Syndrome NJ Chapter meeting in October. www.turnersyndromenj.com Let us know if you are coming to the NYC area for a book signing. It would be nice to meet you! Laura Fasciano 732-217-3021

AThompson - 8/29/2009 8:12 AM
Meghan, You are a miracle that blesses my life and many others. The courage and hope you and your mom show are inspiring. Overcoming trials makes us stronger. I am so proud of you. Can't wait to read your story. Lots of love, Sis. Thompson

Kmendenhall - 8/28/2009 10:30 PM
Way to go, change the world! Love you guys.

Sadez - 8/27/2009 8:44 PM
If any of you guys want any info on our upcoming Utah group annual camp out let me know...and I can send you an invite...it is for families and is one of the activities that the girls enjoy the most! email me at sarahlstevenson@yahoo.com

karatedad - 8/27/2009 6:56 PM
I also have a 14 year old with Turner's. She is a happy teen ager. She does not let this condition slow her down. She recently got her blackbelt in karate!

jodles10 - 8/27/2009 4:45 PM
I have a two year old with Turner syndrome. So glad to see people coming out with more info about! We were told we should only tell family and close friends about like it was a horrible thing. But she is our angel and the life of the family! Thank you for your story!

Mama Bear - 8/27/2009 3:44 PM
Thank you so much! My daughter is 14 and was only diagnosed with Turner's Syndrome in December 2007. It has been a roller coaster ride, but so grateful to see the positive media attention
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