When the Lewises welcomes their first daughter, Blakely, in 2011, Elliot Lewis, the mother recalled that by all accounts her daughter was a perfectly healthy baby. Within the first two months, she struggled to meet her vegetative milestones like lifting her head during tummy time, and the baby was not putting enough wait. Her pediatrician assured the parents by telling them that babies grow at their own pace, and there is nothing to worry about it. But the Lewis family was still concerned. The couple went to the University of Utah neurosciences building for other concepts, where doctors within minutes acquainted them. Blakely had spinal muscular atrophy, which is a genetic disorder that causes wasting and weakness in the muscles, according to the U.S. National Library of Medicine. Lewis recalled that they had no idea before this incident. After the next few hours, the couple got to learn how to care for their terminally ill baby.
After several years, the Lewises conceived a girl again. Through genetical testing, they knew that, like her sister, she would be born with spinal muscular atrophy. But hope came in the form of a newly accepted genetical treatment, the first of its kind for the situation. When Evie was born, she got her first injection of the medication at 12 days old. Her father said that she had received 11 of those treatments. The Lewis’ story told during a news conference Monday at the hospital, and it is one example of how Intermountain Primary Children’s Hospital desires to develop care for children across the Intermountain West, and ultimately, the world.
According to Intermountain Healthcare officials, the new Primary Children’s Center for Personalized Medicine will provide genetic technologies and targeted new treatments to help children with severe medical conditions survived. The new center that is a collaboration amid the University of Utah Health, Primary Children’s Hospital, and Precision Genomics, will offer precision diagnosis, gene therapy, and novel therapeutics, and stem cell resurgent and immunologic medicine.