Fighting for Herself and Her Daughter

Following a lung transplant, Lauren Arkens launched the Breath of Life Foundation to give back to Wisconsin CF families.

When Lauren Arkens became pregnant with her first child, she felt that she had her life under control.

Born with cystic fibrosis (CF), she had always managed to take good care of herself – regularly exercising and complying with her treatments. She was a three-sport athlete in high school, and excelled in basketball, soccer and cross country. She went to college, where during her freshmen year she met and fell in love with the man who is now her husband, Tyler Arkens.

From that point forward, however, life kept throwing challenges at her.

Her daughter Lily, now 10, was born with a heart defect known as hypoplastic left heart syndrome, in which the left side of the heart functions poorly. Shortly after her birth, Lily had three open heart surgeries.

Raising a child with health problems, while also maintaining her own health, proved incredibly difficult, Lauren said. Following her daughter’s birth, she struggled to keep weight on, and her health declined.

“Not only did I have to take care of myself, I also had to fight for my daughter,” she said. “As my CF doctor always says, I got hit with a double whammy. It was really hard.”

In the summer of 2015, Lauren’s doctors suggested a lung transplant, and on the first day of December, she was added to the transplant list. She received the call that lungs were ready for her on Christmas Eve of the same year.

“We left for Milwaukee on Christmas eve at 8 a.m.,” she recalled. “I had the transplant that night into Christmas morning. Everything went well after that, and I had an easy recovery with few complications.”

The year following her lung transplant, Lauren experienced a lot of emotional ups and downs, she recalls. But when she finally recovered, she discovered that despite all of the challenges she and her family had faced, she felt fortunate.

She had a new set of lungs, and her daughter was doing well. Their community had rallied to care for and support her family during the lung transplant. Friends and family members had teamed up to provide them with meals, help them with laundry and cleaning, and even set up a medical support fund to cover uninsured medical costs.

“There was no way we could ever thank all of those people,” Lauren said. “Tyler and I thought the best way to show our gratitude was to start our own nonprofit so that we could give back to others in need.”

Lauren and Tyler’s nonprofit organization, called the Breath of Life Foundation, helps Wisconsin families who are affected by CF by providing financial assistance for medical expenses, healthy lifestyle activities, and other necessities.

To date, the organization has raised $50,000 and supported 15 families. Among the recipients are a family whose child needed to travel out of state for a lung transplant – Breath of Life donated money for airfare and apartment living during the hospital stay. In addition, the Breath of Life Foundation helped one woman pay off past medical expenses.

“‘That was the best feeling in the world,” Lauren said. “It has been so rewarding to hear the stories of what families have accomplished with the support of the Foundation. It makes all the hard work worthwhile.”

Things have been more stable for Lauren and her family since the lung transplant. She and her husband recently bought a new business – a local greenhouse. And her daughter’s health has been stable. But the family isn’t taking this period of relative stability for granted.

“We know that there are a lot of people living long lives with new lungs, but we don’t know what we have left for me,” she said. “And we don’t know what the future holds for Lily. We are just trying to enjoy every day the best we can.”

Article originally published on Vertex Pharmaceuticals Incorporated website: Lauren Arkens launched Breath of Life Foundation

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