Meet Doreen: Mother & Advocate | Turner Syndrome Foundation

Meet Doreen: Mother & Advocate

My husband Gary and I were married for 4 years, the proud parents of Paul, almost 2 years old, and pregnant with Olivia, when we received a call from our OBGYN with our amniocentesis test results. When I replied, “What is Turner syndrome?” our doctor said, “If I were in your shoes, I would consider terminating the pregnancy.”  Devastated, we proceeded to find out everything we could about Turner syndrome. Our choice was never to terminate, but we wanted to find out what was ahead for our child and why a doctor would say something like that. It turns out, our doctor didn’t even know herself what Turner syndrome was.

So many years later it still amazes me how little information is out there regarding a syndrome that affects 1 in 2000 females – and many more who are conceived but sadly do not survive. Only 2% of fetuses with Turner syndrome make it into this world. That statistic in really unbelievable to me, my family, and my now 16-year-old Olivia. It’s also unbelievable that although so many are affected by Turner syndrome, we still have to educate many doctors, educators, and the medical community about this condition.

Olivia, a 45X is the most amazing young lady. Yes, she has differences and struggles. Yes, she has a non-verbal learning disorder. Yes, she had heart surgery at 2 months old to repair the coarctation of her aorta. Yes, she has some hearing loss and wears a hearing aide in one ear. Yes, she is affected by Turner syndrome. And yes, she is simply AMAZING!

We truly believe God puts people in our paths for a season, reason or lifetime. My husband Gary and I met Laura Fasciano at a conference. We were blessed to do what we could to help launch the Foundation. Sadly, my husband, Olivia’s dad, became ill and passed away in 2014. He was Olivia’s biggest fan and also the Foundation’s. Gary is our Turner syndrome angel in the outfield. He knew the Foundation would reach great heights to help all women and girls affected by TS.

Without funds, it is impossible for the Foundation to keep going to make all of the struggles and differences TS girls face easier to live with. We need support for research, education and awareness. We need to keep fighting for these babies, girls, and women. They are our children, sisters, wives, moms and the strongest females on this planet! As my Olivia says, “Just remember the statistics: 1 in 2000 are affected and 98% don’t survive to make it into this world.” Please consider giving what you can.

Join Doreen and Olivia in bringing hope to this mission with a donation today.

One Comment on “Meet Doreen: Mother & Advocate

  1. Thank you for sharing your experiences and personal story. It touched my heart. My daughter is now facing an emotional journey of her own. It seems that not much has changed with professionals, in fact they have devastated her but she is willing to put up a fight for her little girl and hopes that she will make it into this world, she will be loved no matter what.

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