John Luhring, 25, and his wife, Layla, 24, had long planned to host a fundraiser for their youngest daughter, Jayne, when RAGBRAI rolled into town Wednesday. Just seven months old, Jayne was diagnosed with pulmonary agenesis at birth, a rare condition where only one lung forms during gestation.
But, less than a week ago, the fundraiser became imperative.
With tears welling in her eyes, Jayne’s mom, Layla, explained that days ago the couple discovered Jayne’s trachea had an abnormally small opening, meaning she isn’t getting nearly enough oxygen.
“We were thinking, ‘Why is she still so small?’” John Luhring said. “And we found out it is because she has cartilage around her trachea, so the opening is less than half the size it should be.”
Jayne is schedule to have a slide tracheoplasty August 20 and will remain in intensive care at the Mayo Clinic, where she was also born, for at least 30 days. The surgery is projected to take eight hours and could cost as much as $500,000, John Luhring said.
So, now, the couple left in debt from Jayne’s care after birth faces a considerable list of unexpected expenses. Even though their Parkersburg church has been generous in helping to fundraise, the costs can seem overwhelming, the couple said.
That said, it was an easy decision to have the surgery, Layla Luhring said. But she still worries about what is going to happen in the operating room.
“When a doctor tells you your daughter will suffer without surgery, it leaves you speechless,” John Luhring said. “It’s hard to describe what that feels like. But you have to face two realities: You do nothing and the odds are against her or you do what you can to take away her suffering, even if that means causing her (some) suffering” with the surgery.
On Wednesday, the entire Luhring family was at a booth selling popcorn, Gatorade, water and malts. They educated passing bikers on pulmonary agenesis and asked for prayers, and the riders were nothing but supportive, Jayne’s grandmother Marty Luhring said.
While manning the booth, John Luhring said he met a RAGBRAI rider who is a doctor in Canada and who said he previously performed the operation Jayne is scheduled to have.
“It gave me some level of comfort,” John Luhring said. “He said there was an 80 percent success rate, so that gives us hope.”
The family had no idea how they’d done financially Wednesday afternoon, but overall they felt it had gone well.
“It was a blessing that RAGBRAI was coming through town this week,” Layla Luhring said. “It was the Lord’s timing, and we are just really blessed that the riders came through.”
The couple plans to start a Go Fund Me page soon. For more information contact the First Congregational Church in Parkersburg.
via RAGBRAI http://ift.tt/1SD5J7k