Crestwood woman fights heroic battle against Cystic Fibrosis - WDRB 41 Louisville News

Crestwood woman fights heroic battle against Cystic Fibrosis

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Julie Ice credits the support of her husband Roy in fighting Cystic Fibrosis. Julie Ice credits the support of her husband Roy in fighting Cystic Fibrosis.

LOUISVILLE, Ky. (WDRB) -- Life changed in an instant for a Crestwood couple who went from experiencing one of the best times in their life to facing the worst.  The devastating ordeal a young wife battled head-on serves as an inspiring example of life, love, and making every minute count.

Their love story started like most others -- Roy and Julie Ice fell in love and got married.  But it quickly took an unexpected and terrifying turn.

Months after their wedding, Julie discovered the hacking cough she had thought all her life was asthma had been misdiagnosed. She had Cystic Fibrosis -- a virtual death sentence.

As Roy Ice told WDRB's Elizabeth Woolsey, "It was so devastating that from the minute you realize your new bride has a disease, everything gets put on hold -- your entire life -- and you start planning without even knowing it the end of their life, because she has a disease that's going to take her in six years."

But Julie was a fighter.  Diagnosed at age 23, she passed the life expectancy doctors gave her of 29. It wasn't easy.

It's like you're drowning from the inside," Roy Ice says, "because you've got this mucus that's not able to exit your lungs.  It's plugging your airways.  It would be like someone holding a pillow over your face and you're trying to breathe, but you're under water and you've got to breathe through a straw."

Four hours of treatments a day enabled Julie to keep taking each difficult breath.  She and Roy were determined not to let CF get the best of her. But in 2011, she was hospitalized.

Julie wasn't ready to give up, but her lungs were dying. She got sicker and weaker, dwindling to 61 pounds.  She was put on life support, unable to eat or talk.

She was on the organ donor list for a new pair of lungs and time was running out. But it was critical for her to keep pushing, taking one grueling step after another to show doctors her will to live or risk being passed up for a transplant. Days before Christmas, the woman who refused to give up knew her body was shutting down.

Roy Ice said, "I asked her, 'Can you give me one more day?'  She couldn't say anything, but motioned she could.  Part of my nature is to push and want more.  I said, 'Honey, can you give me two?' and she said, 'No.'" 

Julie Ice tells WDRB, "My gut in my body and my mind said this is it.  I knew I wasn't going to wake up the next day."  She sobbed and continued:  "The hardest part for me was not being able to say goodbye to anybody.  All I could do was wave."

Minutes later, they got the call -- another man's death meant Julie would get a new pair of lungs and another chance at life.  She asks herself, "What was it like to hear we're going to do this?  Amazement, shock, scared -- sad because I knew how I had to get those lungs and I felt really sorry for the family."

She continued:  "Probably the first memory I have was getting up and walking four hours after surgery.  I was able to take a deep breath and I thought, wow, this is what breath feels like, it's an amazing feeling, it really is."

Roy Ice said, "I saw a woman so downbeaten she never gave up and had a true courage within her and all she wanted to do was breathe."

Julie Ice said, "Roy has been a huge influence on my life when I didn't have the courage to go on, he gave me the strength." 

Together they had beaten CF, but knew thousands of others were still in the fight of their lives. They would keep fighting to find a cure. The non-profit Julie's Dream Team was born, and painful as it was, Roy relived their journey to write a book.  All of the proceeds go to help find that cure.

They're sharing their story, and their message a year and a half after Julie's double lung transplant.  Roy Ice says that message is, "Don't ever ever give up on yourself.  You have no idea what you can do, what your body can do.  As soon as you get pushed to the brink when you don't think you can go anymore, go one foot in front of the other."

Julie Ice:  "I think the message for me is never take a day for granted.  Spend time with your loved ones, the meeting will wait, the soccer practice won't." 

It's a love story with a happy ending, and another wedding -- a celebration of love and life.   

Roy Ice says, "We did this and we did it together in sickness and in health -- till death do us part."

And Julie Ice says there are, "still a lot of things in this life I plan to do -- the bucket list is slowly being checked off and I'm having a great time doing it because we're doing it with each other."

So far sales of the book and funds raised from Julie's Dream Team, which has supporters around the country, top $220,000 for the CF foundation. You can learn more about it at www.juliesdreamteam.com.

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