The Zahn family of Wisconsin has joined Unite For The Cure to help get Dr. Keirstead’s research over the finish line. Their darling baby Lucy is only four months old, but already this inspiring family is motivated to fight for a cure! They have fundraisers planned, a website built, and are motivated to be part of Unite For The Cure. And we are honored to have them! Here is what they have to say:
Our daughter Lucy was born July 9, 2009. She was developing normally, it seemed, until 4 weeks, when she stopped lifting her head. Everyone reassured us that all babies developed at their own pace, so we tried to push our concerns to the back of our minds. Lucy was never a big leg mover, either, but we thought she’d catch up. At her 2 month check-up, her pediatrician was immediately concerned with the lack of muscles in her legs and neck. She made us an appointment to go to the Children’s Hospital in Milwaukee, and we went down there right away that night. We were there for 3 days while they drew vial after vial of blood, took urine samples, did x-rays and an MRI. Then they told us it would be 6 weeks for results and sent us home to wait. Four weeks later, on October 14, we met with the geneticist, who told us it was what she had suspected, SMA Type I, and that our beautiful baby would most likely not live to see her second birthday. The genetics counselor, bless her, gave us info on FSMA and a clinical trial in Madison. We found strong, faithful people fighting for their children, and learned about all the hope there was for treatment and a cure. We knew that we were in the right place, and that we wouldn’t take Lucy’s diagnosis without fighting alongside these inspiring people. There IS hope for our children; a cure CAN be reached in their lifetime! LucysHopeForACure.homestead.com
