In the beginning of May, Jeremy’s employment was safeguarded but required the family to move to Houston. It meant all new doctors and more tests. It meant more of the unknown and an official diagnosis had yet to come after physicians recommended Brody be examined and tested by a geneticist. “I was pretty much a shell. I don’t know how else to describe it,” Stefanie said.
Between selling a home in Louisiana and buying one in Houston, Stefanie and Jeremy decided it best for the summer to be spent in Midway, Utah. Midway was home to Stefanie, and Jeremy was in Houston working and preparing for the family to join him.
When the official diagnosis of PCH1B was given to Brody in July, so was a shortened life expectancy of 4 months to 4 years, with the occasional case living into adolescence. A physical, two weeks later, suggested Brody’s muscles had deteriorated to the extent that he might not survive the month.
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Stefanie credits her mother for seeing her through the most difficult days of her life - with pulmonology appointments and medical equipment used to preserve Brody’s life in as comforting manner as possible.
Brody’s breathing treatments were regimented and included suction, cough assistance, asthma inhalers, a nebulizer, and continuous positive airway pressure (CPAP) for sleeping at night.
Stefanie’s mom, Carol Collings, could empathize. She experienced her eldest daughter, Emily, waking one morning to complete paralysis.
“I spent 72 days in the ICU with [Stefanie’s] sister, who was 6 ½ at the time. And I had two other kids to care for, and I had no idea what was going on,” Carol said.
“My husband was going through a lay-off, so we were in the midst of selling and buying a house. It turned out my daughter had Guillain-Barré syndrome and she was totally paralyzed and on life support, and hooked up to a respiratory, and all she could move was her eyelids.”
Carol said she didn’t know if her daughter was going to live or die for more than a month.
“I just remember thinking this is five minutes in God’s plan, and if she doesn’t make it, I know we’ll live with her again,” Carol said. “I envisioned her being carried by the Savior, and I think with Brody it was a lot of the same thing … It was a blessing to me that I could understand Stefanie and reassure her that everything would work out, even though it wasn’t the same outcome.”
Today, Emily (Stefanie's sister) has very minimal side effects and carries on a normal, meaningful life with her family.
A MOTHER’S EMPATHY
Photo Credit: Laurel Hansen
18 The Beauty Battalion Magazine