It isn’t everyday that you get to hear the story of a fighter, but Alex Lohmann certainly is one. She shares her life story in hopes to bring awareness to her rare heart condition and give hope to people afflicted with similar conditions.
At 11 hours old, Alex underwent her first open heart surgery. Her parents were told that if she did survive the procedure, she may be a vegetable. However, against a zero-to-slim chance of survival, she lived and beat the odds.
“God had other plans,” says her mother, Lynn Lohmann. “Saying her life is a miracle is an understatement.”
Alex was eventually diagnosed with Tetralogy of Fallot with absent pulmonary valve, a rare congenital condition where her brain was not receiving oxygenated blood.
As a result of the surgery, she was non-verbal for years and struggled to make important checkpoints essential to early childhood development. She underwent several forms of therapy through sensory integration in order for her to learn to communicate. Her parents would trace words on the carpet and repeat lessons until Alex was verbal. Every day was another opportunity for growth, and Alex showed great improvement through using sign language to communicate her needs to her family.
“Repetition helped her brain create new pathways for the information,” remarks Lynn, “It helped teach her to survive, to sit up, to eat, to walk, everything.”
Growing up, she made plenty of trips for answers to her health struggles. She was ferried from Baton Rouge to New Orleans and then to Boston for consultations with specialists and subsequent surgeries. She was prone to seizures due to her heart defect and had to be fitted with a pacemaker in 2013.
Alex’s compromised immune system limited her social interactions, but she was not alone. She was educated with in-home teachers coupled with homeschooling from her mother. She found friendship through her siblings. “I had an older brother and older sister who loved to do things with me,” shares Alex.
Now 26, Alex is living a remarkable life. She is a “dog mom” to a long-haired dachshund named Bella and an aunt to two-year-old Lucy. Prior to COVID, on Sundays, she would help out at St. John’s United Methodist Church as an acolyte, lighting candles and working in the church’s pantry.
Over the years, she has picked up several skills to express herself. She loves creating art through diamond painting, which combines cross-stitching and paint-by-number crafts by gluing rhinestones to a color-coded canvas. The finished product may depict shimmering portraits of animals, nature scenes, and so on. Alex’s most recent diamond painting was that of a tiger.
Most impressively, she learned to ski with the help of her father, Jerome, who once taught skiing. Today, she boasts the skill level of a black-diamond skier through Breckenridge Outdoor Education Center’s adaptive skiing and snowboarding program. From her decade of experience there, her coach believes she could compete in the Special Olympics, an organization that allows people with intellectual and physical disabilities to compete in Olympics-style competitions.
Her other hobbies include cooking and baking which result in the most rewarding part: tasting your creation! While Alex delights in chicken alfredo, fresh-baked cookies and Reese’s chocolate, she also enjoys eating her signature dish, corn soufflé, the most.
Alex’s growth from such a frightening beginning is incredible, and her story is one meant to inspire others to not give up on finding joy in life, no matter the circumstances. “This child is always happy,” says Lynn, “She’s just a joy to be around.”