A True Blessing
September 30, 2015
The Villareal Family, Photos courtesy of Marcy Harris Photography
Elena and her husband, Milan, were living in Russia, where they met, when they had their first daughter, Josephine. At 4 months old, the Villareals noticed something was wrong with Josephine, so they went to the pediatrician. The doctor told Elena and Milan their daughter had Spinal Muscular Atrophy Type 1 (SMA). In 2011, the Villareals decided to move to the United States, where there was more research being done for Spinal Muscular Atrophy. There is no cure for SMA and the average life expectancy is 1-2 years old. Josephine passed away at 15 months in May 2012.
Elena and Milan were devastated and were trying to move on with their lives. In 2014, they found out they were expecting a baby. 75% of pregnancies after having a child with SMA are healthy pregnancies, but the Villareals had their daughter, Evelyn, tested for SMA. She tested positive for SMA Type 1, the same type her sister, Josephine, was diagnosed with, and Elena and Milan were devastated. They began research to see what they could do to help their sweet baby girl and found the Gene Therapy Program at Nationwide Children’s Hospital. So they moved from Texas to Columbus for Evelyn to be treated in the Gene Therapy Program. Evelyn was given a one-time treatment providing nerves in her spinal cord, the nerves she is missing. She is sitting up, crawling, holding her head up-all miraculous for babies with Spinal Muscular Atrophy. Looking at her, you would never know her diagnosis and the journey the Villareals have gone through for their daughters.
The Villareals have stayed with us at the Columbus Ronald McDonald House since February for Evelyn’s treatment. Elena, Evelyn’s mother, said “we’re very blessed and not in distress because of this Ronald McDonald House. We’ve been able to minister to others and it has been a place of joy to us. It has been therapeutic to us to be at the Columbus Ronald McDonald House. To take the extra stressors and not worry about them to focus on your child – it’s been such a relief. A lot of people are going through difficult times, and because of RMHC, you don’t feel like you are alone.”
Our volunteers and staff have loved meeting and getting to know this family and watching Evelyn’s milestones. We wish them nothing but happiness.They know what a miracle their daughter is, and we cannot wait to see her grow!