A Rare Disease Brought These Childhood Sweethearts Together

Having a first child together is a huge milestone for any couple, but it was even more special for one couple, who met as children themselves when they were both receiving treatment for a rare disease.

Emily Kohlman shared the story of meeting her husband Cameron when they were both four years old and in treatment for bladder exstrophy on the Love What Matters Facebook page. Bladder exstrophy is a birth defect that causes the bladder and parts around it to form inside-out.

Emily and Cameron met at Johns Hopkins Hospital in Baltimore, Maryland, and Emily says they shared their first kiss in the accompanying Ronald McDonald House. The pair began dating long-distance — he lived in Ohio and she lived in Wisconsin — in high school, and were married in 2015.

When the newlyweds began trying to conceive a baby in 2016, Emily wrote that they were nervous about whether their child would also suffer from the same condition.

"'Would our baby have bladder exstrophy?' There is not a known case of both parents with bladder exstrophy having a baby together and little research to prove genetic connections. Scary, right? Absolutely," she wrote.

Emily found out she was pregnant, and she and Cameron were excited, but also weary and cautious about their child's health. They took extra precautions, including having specific ultrasounds focused on the baby's forming bladder.

"I will never forget January 10, 2017. The day before, I turned 26 and newly 21 weeks pregnant. The ultrasound technician slid the transducer over my growing belly, when our doctor told him calmly, 'Stop. Right there. There it is!' Comfort flooded every ounce of me. The bladder. We found it… ON THE INSIDE! This was a big deal, not only for us, but for many families with lingering questions for their BE kids, too," she said. The couple's daughter, Everleigh Grace, was born May 23.

Even though bladder exstrophy was a major difficulty in both her and her husband's life, Emily said it was worth the struggles because it allowed her to meet her husband and ultimately start their family.

"Although there were times when I wondered why Cameron and I were chosen to endure the pain that accompanies bladder exstrophy, I now understand," she wrote. "I would relive it 100 times over, to be rewarded with this crazy, beautiful life, alongside my incredible husband and beautiful baby girl."