When Evangeline Owens was only 5 days old, she woke up with a low body temperature and in her mother’s arms. Evangeline and her family lived near Ann Arbor, Mich., at the time and she was rushed to the neonatal intensive care unit at C.S. Mott Children’s Hospital at the University of Michigan. She was hypoglycemic and hypothermic and started to show symptoms of jaundice, tremors and apnea.
There, Evangeline underwent a sleep study that showed severe central apnea, a condition that occurs when the brain does not send the proper signals to the muscles that control breathing. Following a two-week hospital stay, Evangeline and her family were discharged without any answers for her condition.
Over the next several months, Evangeline underwent a litany of tests that came back inconclusive. She experienced tremors in addition to extreme fatigue, sweating and other symptoms that went unexplained.
Wanting a change of scenery for their family, which includes nine other children, the Owens moved south to Gainesville in 2015.
“We had called Magnolia Parke Pediatricians in advance to arrange for Evangeline’s transfer of care,” said Evangeline’s mother, Kelly. “Dr. (Jaclyn) Otero did a massive amount of legwork to get the needed specialists on board with Evangeline’s care at UF Health Shands Children’s Hospital. We had a great first-time experience and immediately felt ‘at home.’”
Doctors continued to work to find a diagnosis to explain her condition. More genetic testing and lab work gave only some indication of glycogen storage disease, a disorder where glycogen is not processed properly within muscles and other organs. However, last year doctors gave a definite diagnosis of mitochondrial disease, an illness that occurs when structures that produce energy for a cell malfunction.
“We are monitoring every organ system as part of her care because it can affect her at any time,” Kelly said. “She is in PT and OT to keep her moving forward; she sees about nine specialists at UF Health Shands — we work very hard to manage her care and to make sure she has a good quality of life.”
Evangeline is now 2 years old and enjoys many things like trips to the park, visiting with her Mimi (grandmother), and playing with her siblings.
“The last two years since Evangeline was born have been the most challenging we have faced in our 20 years of raising 10 children,” Kelly said. “This has been an entire side of life I didn’t even know existed.”
The Owens have learned to ‘grieve the hard things while celebrating the little things, and to be thankful in the midst of it.’
“I am excited about the new opportunity (this experience) has brought into our lives — to be part of the CMN Hospitals family, meeting new friends and making a difference while giving back after all we have been given!” Kelly said.
Are you interested in becoming a CMN Ambassador family? Connect with us!
Where does my CMN gift go? | February 2023
Feb 8th, 2023
Because of your continued support and generosity toward Children’s Miracle Network Hospitals at UF Health Shands Children’s Hospital, UF Health has purchased two Bunnell high-frequency jet ventilators. The Bunnell high-frequency jet ventilator provides low-flow ventilation. By removing carbon dioxide, this device is particularly effective in treating infants with air leaks. The high-frequency jet ventilator also supports infants with pulmonary interstitial emphysema,…
Introducing our 2023 Champion, Lauren Price!
Feb 8th, 2023
Every year, 170 Children’s Miracle Network Hospitals identify a “Champion” in each of their communities to serve as the face for children treated at their local children’s hospital. These ambassadors spend the year advocating for the charitable need of children’s hospitals across North America. UF Health Shands Children’s Hospital is excited to announce our 2023 CMN Hospitals…
Year in Review: Local Champion Beckett
Feb 8th, 2023
January 15 is a special date for Beckett and the Genuardi family. It’s a day where the 8-year-old celebrates all he has overcome and accomplished. Because on this date eight years ago, the Genuardi family received the greatest gift of all – a heart transplant for Beckett. “We celebrated my ‘Heart Day’ this year by…