A Breath for Ellie

I was 11 weeks pregnant when my husband and I found out our little daughter would be born with Cystic Fibrosis (CF), a genetic disease that affects the lungs, liver and digestive systems of nearly 30,000 people in the United States.  It was a devestating weekend as we grieved the healthy newborn every expecting parent prays for, but we decided then that we would do everything we could to help our baby and all the others like her.

Ellie is a remarkably healthy little girl by CF standards, but she has to work extremely hard, every single day, to remain healthy.  Each day Ellie swallows between 20-25 pills and spends just over two full hours hooked to machines that deliver medicines straight to her lungs and work to clear her airways.  I wake her up at 5:30 on school mornings to start her routine, and at 4:30 in the afternoon, regardless of what's going on, she stops what she's doing to begin her evening routine.  This isn't always easy for Ellie but even at 7 1/2 years old, she understands it is necessary to keep her lungs clear.  Because this is a progressive disease, we're aware that Ellie's health will continue to decline, losing an average of 2% of her lung function each year.  Our hope for a healthy future for her lies in the medical advances made by the Cystic Fibrosis Foundation, each advance a celebration for our family and families like ours.

When the CF Foundation was first established, children with CF weren't expected to live beyond five years old.  Through the extraordinary work and dedication of researchers funded by the CF Foundation, the life expectancy is now 37 years old.  While that is a remarkable difference and has allowed many CF kids to reach adulthood, it's extremely difficult to look at my daughter and know that statistically, as the disease stands right now, I will outlive my little girl.

Thankfully, there is great hope and anticipation in the world of CF.  In January of 2012, the FDA approved a new drug that, for the first time, is able to combat the root cause of the disease for a small portion of patients with CF.  This pill, for the first time, allowed 4% of the CF population and their families to begin dreaming and planning of a future that includes college and children, a career and retirement!  The research that emerges each year is encouraging, and we are committed to helping the CF Foundation until the entire CF community, including our own Ellie, has this kind of life saving drug.

Because the disease affects such a relatively small portion of the US population, Cystic Fibrosis is considered an "orphan disease," and receives no federal funding.  The drugs the CF Foundation has in development are all funded entirely by private and corporate sponsors.  Our family has been involved in various fundraising efforts for the CF Foundation since Ellie's diagnosis in 2005, and friends and family have joined with us through the years in various walks, hikes, bike rides and wine tastings.  This year we're adding an exciting night of food, live music, and raffle and auction items that will continue to fund medical advances for CF patients.  This event, named by a dear friend "A Breath for Ellie," will be held on June 15 at the Wheaton College Recreation Facility.  Tickets are $15 per person and include dinner, catered by the Chateau restaurant, and live music by local award winning composer and musician, Krisanthi Pappas.

If you are interested in purchasing tickets, or would like to know more about the event or CF in general, I would love to hear from you!

Blessings,

Jenica Leo

508.286.4228

ABreathForEllie@gmail.com