The purpose of the Hope A. Held Endowed Fund is to provide ongoing unrestricted funding for the Smith-Lemli-Opitz Foundation.
Hope Held was born on July 22, 1994, at 32 weeks and passed away on February 3, 2026 at the age of 31.
Hope’s SLO story, told by her mother, Dana.
Hope was not growing in the womb, and I was put on bed rest at 26 weeks. My physicians recommended it would be better to deliver her early and find out what was going on.
At that time, amniocentesis testing for SLO was not available. She was diagnosed with Smith-Lemli-Opitz Syndrome while still in the NICU, and thus our journey began.
Our medical team felt Hope’s prognosis was very poor and told us she would more than likely not make it through her first year. I guess God and Hope had a different plan, because the miracle she is, she lived for 31 years.
Hope was one of the first patients to go on the cholesterol suspension protocol. She is currently receiving cholesterol, liquid whole egg, and Cholbam.
Much is still unknown about this syndrome, and we wanted to set up a fundraising mechanism that could continue to support the SLO foundation.
You are making a meaningful impact when you donate to the Hope A. Held Endowed Fund for Smith-Lemli-Opitz Syndrome. Click the button below to give your gift today.
Sincerely,
Dana Held
Parent of Hope A. Held
