Mom Loses Daughter To Cystic Fibrosis, Raises Awareness, Funding

SOUTHOLD, NY — Three years ago, Janet Auer, who works at the Southold Free Library, faced a pain no parent should ever have to bear. Her daughter, Ericka, 18, died from cystic fibrosis.

And now, the library and community that love Auer and her family want to give back in Ericka's name: In honor of her memory, on Nov. 17 to 20, Friday through Monday, patrons may make a donation to the Cystic Fibrosis Foundation in lieu of overdue fines; any amount will waive fines. Goodwill donations will be gratefully accepted as well.

Auer opened her heart and shared her story with Patch.

In 1991 she and her husband Erik had a son, Zachary, "a beautiful blonde haired blue eyed baby boy. Five months later our world was crushed when Zac was diagnosed with CF. At the time we had no idea what that even was," she said. "A recessive genetic disease? You've got to be kidding me. Well, 26 years later we know almost everything about this disease."

According to the Cystic Fibrosis Foundation, cystic fibrosis "is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In people with CF, a defective gene causes a thick, sticky buildup of mucus in the lungs, pancreas, and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage, and eventually, respiratory failure," the site explains. "In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients."

For the next 4 years, with the help of breathing treatments and the right medications, their son seemed to be doing fine, Auer said.

"In 1996 we learned through amniocentesis that our daughter would be born with CF. We had a 1 in 4 chance of having a baby with CF. We thought the odds would be in our favor," she said. "Unfortunately, they weren't."

The couple's only hope was that their baby girl would be as "healthy" as her brother, she said. "Unfortunately, not. Ericka was always more sickly."

Reflecting on years' past, Auer said she remembers times when both kids were sick and on IV antibiotics at the same time. Auer, also a member of the Southold Fire Department, would do the IV at home most of the time; after a hospital stay, IV is usually 21 to 28 days or longer, she said.

"Once they were both in the hospital together, sharing a room. I always stayed with them, never leaving. This was a gift. I would later be told by my son that he and his sister were lucky I was there — some children don't get that opportunity and spend days alone in the hospital," she said.

Her husband, she said, a union plumber worked during the day and visited the hospital during the early morning and at night. As he often works on large-scale hospital jobs, sometimes he'd be able to work at the hospital where both his children were patients, Auer said.

For their whole family, a world colored by CF meant countless hours at doctor's appointments, getting blood work, X rays, CT scans, PFTs , IV antibiotics, doing breathing treatments with a vest machine, and taking many pills each day.

"After turning 16 both my children also became diabetic due to the CF," she said. "Ericka had a feeding tube in kindergarten."

In addition, there was the constant need to order medication and deal with insurance, a "full time job in itself," Auer said. "At the same time, we needed to keep things 'normal,' whatever that is."

Despite the challenges, Auer and her husband made family vacations a priority, making memories with their beloved children.

CF, however, has shifted the landscape of their family life.

"There were times when we would have to tell family we couldn't make a holiday, or they couldn't come over because someone was sick. That was hard. If my child caught a cold from someone it would turn into 21 days of antibiotics. People still don't understand this, a cold to them is not the same as a cold to a healthy person."

Things took a turn for the worse when Ericka developed liver disease; only 3% of people with CF develop the complications she suffered, which caused an enlarged spleen and portal hypertension, coughing up blood , getting blood transfusions and almost dying in 2010 .

"She did, however, get to ride in a helicopter to the hospital — not on my bucket list, but maybe hers," Auer said, adding that she rode alongside her daughter.

Their lives were a constant rotation between Cohen's Children's Medical Center, Stony Brook University Hospital and Columbia Presbyterian in New York City.

"Hard to do when you live in Southold, but we made it work," she said.

The hardest thing of her journey as a mother, watching her beloved child endure agony, was when she offered to give part of her liver to her daughter and was told they had to complete, for example, "Steps 1 through 90 first. By the time she was ready it was too late. Her lungs were too fragile . . . they could not operate on the blood clots that had formed in her abdomen, neck and arm. We soon learned what palliative care and hospice were."

Auer was facing unimaginable loss: "Asking my daughter what she wanted to be buried in and what cemetery was the hardest thing I have ever had to ask anyone."

But even at the darkest part of her young life, her daughter, Auer said, remained true to her beautiful spirit.

" Even after all that, Ericka's wish was to adopt a cat — our other two passed away in 2014 before her, and I think they needed to be there in heaven for Ericka — and donate dog and cat food to the animal shelter. We did this less than a week before she passed away."

Remembering her girl, Auer said, "My daughter had a huge heart, she loved animals, she was courageous, strong-willed, feisty, beautiful, she loved to play jokes. Believe me, she if she didn't like something she would let you know. My brothers used to joke that Ericka was 4 feet tall and 10 feet of mean at times. But who could blame her? That kid went through hell. So many adults I know wouldn't be able to go through what she did."

And it's in her memory that Auer and her family carry on, raising funds to make a difference.

"Ericka always said she would not have changed things," she said. "Sure, she wanted a cure for CF, but CF made her who she was and it made us think of what was important in life."

She added, "Ericka had two quotes she always used to say: 'It can always be worse.' Especially while in the hospital and seeing other sick kids. And I love this quote of hers: 'I don't need easy, I just need possible.'"

"My children are my heroes," Auer said. "I love them and look up to them. My son will turn 26 on December 9. For him, and all of the other children and adults living with this deadly disease — this is the reason we need to raise funds and find a cure so no one else has to go through what we have."

The Cystic Fibrosis Foundation is a non-profit organization in the United States established to provide the means to cure and control cystic fibrosis. For more information, click here.

Patch photo courtesy Auer family.