Erin’s Story

Erin, age 16, was diagnosed at birth with Cystic Fibrosis. Less than 20 hours after being born, Erin underwent surgery for merconium ilius. Erin was also diagnosed as pancreatic insufficient and taking enzymes in applesauce by the time she was 3 months old.  We did manual chest physiotherapy and nebulizer treatments from the beginning and were fortunate enough to get her a vest by the time she was 2 1/2.  She struggled with weight gain and infections, but we thought she was beating the odds. While most kids receive their first hospitalization by kindergarten, Erin was 9 by the time she was admitted for her first ‘clean out’. However, while most kids lose 2-3% lung function every year, Erin began losing 10-12%.   Erin’s 2nd admission was 9 month’s later, then 6 months, then 3 months, then every 6-12 weeks after that.  At age 12, she was diagnosed with CF related diabetes and required daily monitoring and nightly insulin shots.  By 13, talks began about end stage CF and the possible need for a transplant, but in order for that to even be a possibility Erin needed to gain some much needed weight so she had a gtube and a port placed.  Things began to improve somewhat. Two months shy of her 15th birthday we were told she had 1-2 years left to live without a transplant; by this time her lung function was in the lower 20’s. By this time Erin was enduring over 3 hours of treatments daily, she needed oxygen, and used a bipap machine, but nothing seemed to be helping.  We traveled to St. Louis, MO for a week long evaluation in October 2016. Erin and I relocated to St. Louis at Thanksgiving and she was officially listed December 23, 2016.  Erin received her new lungs February 5, 2017, at the age of 15.  She has had several complications, some major but mostly minor, along the way, but she is making the most of her second chance at life.

It was an honor to be the first recipients of the Breath of Life Foundation grant.  In the span of 6 weeks, we went from hearing our daughter had 1-2 years left to live to having to figure out how to keep our family afloat living 8 hours apart for at least four months.  We were trying to figure out logistics of lodging, daycare, travel…everything, on top of trying not to focus on the fact our daughter could barely walk 20 feet most days.  Before I knew what was happening, Lauren called and said a check was in the mail and we were to use it for whatever we needed.  The piece of mind that came with that check was priceless.

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Breath of Life Foundation
W5726 Firelane 12
Menasha, WI 54952