Kevin J. Lederer Life Foundation - 2018 Family Story

Josie and Esten

Family Stories

Josie and Esten

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Our journey began a little over four years ago when, just before my 25th birthday, I had emergency open heart surgery to repair an aortic aneurysm and dissection. I was so young, and what happened was so severe that my cardiothoracic surgeon suspected a connective tissue disorder. After consultations with geneticists and cardiologists, what my surgeon suspected was confirmed. I was officially diagnosed with Marfan syndrome, and I was told that pregnancy would be too stressful for my heart and there was also a 50-50 chance our children could inherit the disorder. If we wanted children, doctors recommended we create embryos through IVF and have them tested using PGD/PGS before transferring to a surrogate.

After three rounds of IVF in 2018, we are happy to have five chromosomally normal, Marfan-unaffected embryos ready for a surrogate. We are currently waiting to be matched.

Esten and I are so touched and grateful to be the recipients of the Sophie St. Aubin PGD for Life Grant as we have seen firsthand how devastating a genetic disorder can be.

When we found out that the next step was IVF, we thought our dreams were shattered

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Infertility affects 1 in 8 couples. The Life Foundation is a non-profit, all-volunteer organization and donations directly support providing patient education and grants to those struggling with infertility.