Stephen Lilly-New Lungs New Life

Believe In The Steve" is the title my brother Steve came up with for his blog while sitting in his hospital room at the USC Keck Medical Center while waiting for a new pair of lungs. My name is Jessica Lilly and I am his sister. We both were born with the genetic disease Cystic Fibrosis and our whole lives my brother has struggled immensely with his health. He has spent most his life in and out of hospitals. Those stays have included countless sinus surgeries and bronchoscopes. In the last year his visits have become much more frequent. What once used to be a 2 week stay every couple months had turned into being admitted every month with his stays at home becoming less and less frequent. Now at the young age of 35 with only 28% lung capacity left it is time to get Steve a new set of lungs. Something incredible about his story is that 99.5% of men with Cystic Fibrosis are unable to have children, he has 2 beautiful healthy ones! Anna who is 7 and Liam who is 5. He beat the odds there and is going to do it again. With all that is going on and all that is about to begin the last thing him and his wife Renee should have to worry about during this time are their finances. Along with all the hospital bills we have yet to see there is rent, food, bills, car payments and all the other expenses that come along with daily living. His wife Renee has been by his side since he went in the hospital now over 3 weeks ago. Just yesterday he was officially accepted to be on the transplant list. Now the waiting begins. It could be a week or it could be months. We are hoping he will be able to go home and be with his family in the meantime but as of today it is not looking like it. Tomorrow he will be getting transfered back to Hoag, a hospital much closer to his home and family. If you know Steve, you love him. He is such an amazing, sarcastic, loving person with such a positive outlook on all that he is going through. His lungs may be crap but he sure has a heart of gold. He is always there to help and when he physically can't, he will be there with his sarcastic words of wisdom. My brother dreams of a life where he can play with his kids and not get out or breath. I know he thinks and worries about what's going to happen if they run out of money or can't pay rent and he needs to save his strength for the fight that has begun. He has so much to live for. They need help and we can all help by donating what we can to help them get through this critical time. Once the transplant has taken place we want to make sure he is comfortable and stress free. Imagine having to think about every breath you take, feel every breath you take. It's so easy to take for granted such a thing as breathing. $1, $100, $1,000 anything and everything will help. I dream big and hope to raise a big amount. As his musical idol Josh Homme (Queens of the Stone Age) has said "If someone asks you what time it is, tell "˜em "now". It's the only one that matters." Please donate and help my brother and his family and join us in being a Stever Believer!! And if you are unable to donate please share his story with friends, family, co-workers, heck anyone who will listen. What we raise here will all go to him for his hospital stays, surgery, aftercare and to keep him comfortable and worry free from here on out. I pray that he gets what he needs. After all he has been through in his lifetime, he deserves it. Anything and everything will be so greatly appreciated. You can find his blog at Believeinthesteve.blogspot.com


P.S- My brother is my super-hero.


Lots & Lots of Love,

Jessica Lilly & Family

To find out more about Cystic Fibrosis/65 Roses check out the links below.

http://www.cff.org/
65 Roses

Steve, Renee, Anna & Liam at Coachella 2013

Steve and Josh Homme at Coachella 2010


#believeinthesteve

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Organizer

Jessica Lilly 
Organizer
Long Beach, CA
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