ROCHESTER, N.Y. (WROC) — Sevyin Jordan’s bright smile, big brown eyes and head of curls bring joy to her family, but it’s the 13-month-old’s will to survive that keeps her mom, Breonna Orum, fighting despite the odds.
“They had me plan her funeral at 8 months pregnant,” the Rochester mom explains.
Orum says she was told to end her pregnancy due to a birth defect called heterotaxy syndrome. It’s a rare condition that affects the placement and function of vital organs, including the heart and lungs.
“They told me it was less than 20 percent chance that she would live. Even if she did live, she wouldn’t make it past her first birthday. That’s what I was told.”
Last month, on April 14, Orum celebrated Seviyn’s first birthday in the ICU at Boston Children’s Hospital. The mom and daughter flew to Boston in March for a series of complex surgeries. Unfortunately, Seviyn caught two viruses on the flight there, and her situation continued to worsen.
Orum says she walked into her daughter’s ICU room on the eve of Seviyn’s birthday.
“I’m like, girl, we got 10 minutes until your birthday,” Orum said.
Orum says as she was singing to her daughter, she was rushed back into open-heart surgery.
Seviyn remains in Boston in critical condition, but this week, her mom is back in Rochester to host a fundraising walk for heterotaxy. Orum says she wants to raise awareness and help other families dealing with the diagnosis.
“This has been the toughest season of my life. If I can help you a little bit, that’s what I want to do,” explained Orum.
She says she’s learned a lot about not giving up by watching her baby girl, Seviyn, whose name means completion and spiritual perfection.
The Seviyn Strong Heterotaxy Awareness Walk is Sunday, May 24, at Genesee Valley Park in Rochester. The walk begins at 9:30 a.m. For more details, click here.