ROCHELLE – Cierra McGinnis will be having open heart surgery on Jan. 14, just 15 days after her 16th birthday.
Cierra is nonverbal and has Down Syndrome. Two years ago she was diagnosed with Hypertrophic Obstructive Cardiomyopathy with severe subaortic stenosis (narrowing below the aortic valve) and an enlarging heart, all of which are not normal for Down Syndrome.
Her family was looking into having surgery done days before the COVID-19 shutdown.
“Due to the shutdown, doctors began monitoring her heart and put her on Atenolol to ‘buy time,’" a GoFundMe page for Cierra said. “In Sept. 2021, doctors stated it was time to do surgery as it cannot be delayed any longer.”
Her surgery is set to take place at Children's Hospital in Milwaukee. There, they will be surgically removing a block of her heart muscle which will widen the left ventricle allowing better outflow. This muscle is right next to her "electrical line" within the heart, which heightens her chances of it coming back in the future or having other underlying issues post surgery.
Over the last two years, Cierra’s family has watched her energy level decline “drastically.”
“She is eating less and has lost close to 10 pounds,” the GoFundMe page said. “She also is sleeping a lot and has little to no desire to play or even go outside. As a result, if we need to take her anywhere, we tend to have to use a wheelchair because she throws a fit and refuses to move. She has also been home schooled these last two years because it's not safe for her to be in a school setting due to the chances of her catching something. So, needless to say we have had to adjust our lifestyle to care for her needs.”
Cierra’s mother, Stacy Leifheit, was encouraged by friends to set up a GoFundMe page in hopes of getting some of the expenses she’s incurred and will continue to incur back.
“Over the last two years, we have taken her to several cardiologists appointments in Rockford, Chicago and Milwaukee,” the GoFundMe page said. “Plus, come January, we will sustain travel and hotel costs due to her surgery as well, as we live in Rochelle, and her surgery is two hours away in Milwaukee.”
Doctors expect Cierra to stay in the hospital for at least two weeks before she comes home and has at least a two month recovery period. She’ll have follow up cardiologist appointments in Rockford and Milwaukee afterwards.
The GoFundMe page for Cierra can be found at gofund.me/16b69750.
A benefit will be held on Friday, Nov. 5 at 5 p.m. at Sledgehammer’s in Oregon. The band Broken Roots from America’s Got Talent will play at the benefit along with five other bands. A silent auction will be held and all proceeds raised that night will go to Cierra. See the Sledgehammer’s Facebook page for more details on the event or go to facebook.com/events/3222951691273428.
