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PROVO — Bailey Seay isn't taking one minute with her toddler son, Laine, for granted. While visiting a park when she was 26 weeks pregnant, she couldn't breathe. Her lung collapsed and she almost died.
"Every time I laid down I felt like I was drowning," she said.
Doctors performed emergency surgery and diagnosed her with lymphangioleiomyomatosis, or LAM. It's a rare lung disease that occurs in women of childbearing age that's exacerbated by estrogen.
"I ended up having him at 36 weeks and six days, so he was almost full term," said Seay. "We started writing a bucket list because everything you read online says you have five to 10 years from diagnosis."
Seay has connected with other women who have LAM on social media. She said some are surviving up to 20 years. There are only 1,000 cases of the disease in the U.S. and Canada combined, making it very hard to study. Living with it isn't easy. LAM causes cysts in the lungs that burst. Seay is on oxygen most of the time. She jokingly called the long, clear cord attached to an oxygen tank her "50-foot leash."
Just going up the stairs is like climbing a mountain. Folding laundry is a major feat. She strategically placed boxes of toys throughout the house to reduce her physical activity while keeping Laine happy. Doctors say she'll eventually need a transplant, but they'll hold off as long as possible.
"Lung transplantations have their own problems," said Dr. Douglas Ross, pulmonologist at Intermountain Healthcare. "There are problems with rejection and problems with infections and so people with lung transplantation — their mortality is still very high."
Ross said Seay's lungs are still partially collapsed. A medicine is in clinical trials that would slow the progression of the disease. It's not a cure, but she's hopeful, and she has an incredible attitude. Each day, each tiny moment with Laine is precious, she said. She fights the disease with the courage of a warrior.
She's a little go-getter. She has a young son, she's limited. She's got shortness of breath. But she's going to be a great spokesperson and advocate for this rare illness.
–Dr. Douglas Ross
"She's a little go-getter," Ross said. "She has a young son, she's limited. She's got shortness of breath. But she's going to be a great spokesperson and advocate for this rare illness."
Seay got Laine up from his nap. She tickled his tummy while she changed his diaper and he laughed. Yes, a mom's life is full of little wonders and mundane tasks. In this case, it's also full of courage. Seay isn't just her son's caregiver. She is his teacher.
"I remember holding Laine in the hospital and thinking, 'I have this baby and I have this disease, how am I going to live my life?’ ” Seay said. "I have to take care of this little human and if I'm depressed and mad at the world I'm never going to teach him to live a proper life."
Laine sat on the floor by his mom playing an impromptu tune on a toy piano. She marveled in the miracle of him and smiled. "I need to teach him how to get through trials."
Bailey's treatments are expensive. If you'd like to help her with medical bills, visit her GoFundMe* page.
*KSL.com does not assure that the monies deposited to the account will be applied for the benefit of the persons named as beneficiaries. If you are considering a deposit to the account, you should consult your own advisors and otherwise proceed at your own risk.