If you would like to view a slide show of Lily you can click on the picture link below. There is music, so make sure your volume is turned on.
Dear Friends and Family,
Eight years ago we were blessed with our second child. Lily Grace entered this world under very different circumstances than our son Cade. Minutes after Lily was born, the delivery room quieted and whispers were exchanged among nurses and physicians. Lilys' tummy was slightly hard and distended. At this point nobody knew the diagnosis that was soon to be given. Lily was rushed to intensive care and had immediate surgery to remove a severe blockage in her intestines. When her surgery was over we were informed that although it went well they had discovered something much worse than they had expected. We were about to hear the most heartbreaking news we had ever received. Our brand new baby girl had a FATAL disease called Cystic Fibrosis.
The following months consisted of trying to keep a normal life going for our two year old son, watching our little girl fight so hard to leave the hospital, a second surgery and hospital stay, and trying to educate ourselves about this horrible disease. Through this time we had the most amazing support from our family and friends. We called on God and he gave us the strength and grace we needed minute by minute.
We learned that Cystic Fibrosis is a genetic disease that nearly thirty thousand children and young adults live with. Thirty years ago the average lifespan of a person living with C.F. was four years old. Thanks to new life sustaining therapies that have been discovered, it is now up to thirty six years old. Some will pass this median age but still many will not make it through childhood. One in thirty people carry the C.F gene and when both mom and dad happen to carry it , they have a twenty five percent chance of having a child born with C.F. Cystic Fibrosis mostly affects the lungs and pancreas, but can also affect many other organs as well. There are some VERY PROMISING drugs that are being studied! In fact on January 31st, 2012 the first drug ever to fix the underlying defect was FDA approved!!! This will completely change the lives of the four percent of people that have the specific gene that is corrected by this drug!! The reason these kids lives will be changed is because of every one of you who has supported and donated to the CF Foundations!! The next step is to get a drug approved that corrects the gene that makes up ninety five percent of people with CF. The Cystic Fibrosis Foundation is so remarkable for their dedication to finding a cure and their distribution of funds. More than ninety cents on the dollar goes towards researching a cure, which is extremely high in comparison to many other foundations.
We must take many precautions daily to protect Lily from harmful germs and lung irritants. Lily takes more than twenty pills a day just so she can eat and continue to grow. She also does four seperate breathing treatments, where she inhales medicine for twenty minutes EVERY morning and EVERY night. She follows this routine with another half hour of chest therapy where she is hooked up to a vibrating vest that shakes or oscillates her lungs. Although this is a lot of work to expect out of such a little girl. She does it every single day and always has a smile to share with anyone around her. We try hard not to let Cystic Fibrosis get in the way of letting our children live a happy and exciting life. It is a challenge that we face but are hopeful that one day we will no longer have to think about it. We are so thankful for all our blessings and we cherish everyday we get to spend together as a family.
As the parents of a little girl with Cystic Fibrosis, it is our responsibility and honor to help the Cystic Fibrosis Foundation, and we are once again asking for your help.
Cystic Fibrosis is not at the top of the list for major drug companies. Due to this, most of the money that aids in research will come from friends and family of those affected by C.F. Every year the Cystic Fibrosis Foundation holds the Great Strides WALK. In the last eight years TEAM LILY GRACE has brought in over $288,000.00!!! Every dollar raised, helps bring Lily and all the other people living with C.F. that much closer to being able to live a normal life without suffering from Cystic Fibrosis.
We need your support now more than ever as Lily is clearly in a race against time. Below are five different ways that you can help us fight Cystic Fibrosis!
1 Join TEAM LILY GRACE and come out and walk with us at the Great Strides Event on May 5th 2012 in Gig Harbor.
2 Start your own Co-Team of Team Lily Grace with your workplace or group of friends. Many companies will match funds that you raise
3 Ask Businesses to make a corporate sponsorship. If interested in this, email Heather at firstname.lastname@example.org Remember all donations are 100% tax deductible
4 Sponsor someone who you know who is walking at the Great Strides Event (i.e. me )
5 Keep Lily Grace and her family in your prayers!
Thank You for all your support! Love, The Paulsons
The Cystic Fibrosis Foundation is well known in the medical community for its efficiency in directing donation dollars to vital research, grants and new medications. We were so deeply touched by your generosity last year and hope that you will be able to help again in 2012. If you choose to make a tax- deductible donation, please make the check payable to the Cystic Fibrosis Foundation or you can also do so online. Any amount is appreciated and every dollar donated brings Lily Grace one step closer to being cured. The support we have received from you all in fighting her disease, not only financially but all of the prayers, has been the greatest unexpected blessing of her diagnosis.
We will also be having other fundraising events through out the year as well, including Concerts, Poker Tournaments and our annual Driving For A Cure golf tournament. If you are interested in any of these events, you may contact us at email@example.com
Making a donation is easy and very secure! Just click the "Click to Donate" button at the bottom of this page to make a donation that will be credited to my Lilys team. Any amount you can donate is so greatly appreciated!
You may also send checks made out to C.F.F to 7557 Northcreek Lp Gig Harbor, WA 98335
Cystic fibrosis (CF) is a devastating genetic disease that affects tens of thousands of children and young adults in the United States. Research and care supported by the Cystic Fibrosis Foundation is making a huge difference in extending the quality of life for those with CF. However, we continue to lose precious lives to CF every day. That's why your help is needed now more than ever to ensure that a cure is found sooner - rather than later. To learn more about CF and the CF Foundation, visit www.cff.org.
Together, we can make a difference in the lives of those with CF! Thank you for supporting the mission of the CF Foundation and Great Strides!