Gina Vaughn-Wilson is a “mom on a mission.” She and her family have been on a medical journey since her daughter, Emmie Wilson, was about 7-months-old. In April of 2023, just two months before Emmie turned two, she was finally diagnosed with an extremely rare genetic disorder. A few months later, she was in heart failure.
In September, Emmie and her family were at one of her many medical appointments. When the doctor listened to her heart, it was racing. Emmie headed to the hospital.
“At the emergency room, things were out of normal range,” said Emmie’s mother Gina. “They said there was a gallop in her heartbeat.”
Emmie’s left ventricle was enlarged and not functioning properly. Her heart was struggling to pump blood to the rest of her body. Despite having no symptoms beforehand, Emmie was diagnosed with dilated cardiomyopathy and spent eight days in intensive care. Emmie’s doctors suspect this had been developing slowly.
Emmie was also diagnosed with an ASD, or atrial septal defect. She has a hole in her heart that likely will not close on its own. Gina said doctors told her they wouldn’t normally close an ASD until a child is five-years-old, but Emmie’s is too big. She may need surgery in the spring of 2024.
Emmie has been home since her stay in the ICU. She is on medication and has no restrictions. Her medications are working, but overall, her heart has not improved.
Since Emmie’s diagnosis is still relatively new, there are many unanswered questions Gina says their family is still “in the thick of it.”
“There is only one study written about her genetic condition,” Gina said. “There is nothing written about an association with her heart condition, but that doesn’t mean its not connected…We do know the hole in her heart didn’t cause the dilated cardiomyopathy. They are separate entities.”
Gina and her family are sharing Emmie’s story as an Inspirational Honoree at the 40th anniversary 2024 Syracuse Heart Challenge on Sunday, April 14th.
“Sometimes it feels like I’m going through this alone. I want to be able to share her story so others don’t have to feel alone in this struggle,” Gina said. “I’m honored to be able to put a face and personality to this thing that you don’t always see.”
Emmie’s medical journey has become a family affair. For every doctor appointment, Gina and her eight-year-old daughter, Liberty, made a bracelet to give to someone. Now, Liberty is even joining the Syracuse Heart Challenge.
“Liberty told me she’s raising money for her sister’s Heart Walk,” said Gina. “She’s even collecting change.”