No parent should ever have to accept that there is no hope to save their child's life. Having battled TTTS, we experienced firsthand the power of hope. Twin to Twin Transfusion Syndrome (TTTS) should have taken our daughters' lives, but after our frantic search for information and resources, fetal surgery saved them. Today, as grateful parents of healthy identical twin girls, we are proud as founders to continue to lead the Fetal Health Foundation, a nonprofit dedicated to hope for expectant parents who've received a fetal syndrome diagnosis.
Like us, families diagnosed with a fetal syndrome have only a few emotional days to find a life-changing medical treatment. Sadly, and far too often, they've been told there is no hope for their baby or babies to survive. In this terrifying moment, Fetal Health is there to provide emotional support and direct connection to leading fetal treatment centers and doctors around the world.
In 2004, I left my full-time position as a CFO and spent the next eight months creating the TTTS Race for Fetal Hope (fka Race for Fetal Hope). Today there are a series of events to support fetal syndromes. The flagship race, The Great Candy Run, raises awareness and funds to support families with fetal syndromes, and funds research to improve fetal syndrome outcomes. Quickly we discovered that funding wasn't the only unmet need in our community.
In 2006 we founded the Fetal Health Foundation, a 501(c)(3) non-profit charity that provides factual medical information on fetal syndromes, provides unconditional support to families dealing with these syndromes, provides advocacy and awareness around fetal syndromes and provides research grants funding new treatments and technologies providing hope to save our babies.
We hope you'll join us, along with our inspirations, our daughters Aspen and Ashley, as we continue our efforts make sure every child battling a fetal syndrome has HOPE.
-Lonnie and Michelle Somers