First of all, THANK YOU THANK YOU for taking time out of your day to share in our story. It is because of our friend and family that we have had such a successful first year battling this disease. Whether you decide to walk or not, donate 1 dollar or 100 dollars please share our story with your own network to help spread the word and find the cure. The only thing holding us back from giving Sloan a long, uninterrupted, life is money. The research is being done and doctors are in place to make miracles happen. It is only a matter of time and dollars before the entire CF community comes together to celebrate a true miracle.
As we sit here this snowy Denver morning thinking about this last year it brings on a whirlwind of emotions. This disease did not enter our family with the birth of Sloan. It has been a part of Jorde's life for the last 15 years as his Cousin, Madison Dallas fought for each day she lived. She left her disease in the dust in October 2011, at 14 years old, as she went to place where pain and suffering were no more. She is Sloan's guardian angel and our hero. Her battle with CF, as explained in our CF video shared here: was particularly complicated. Just 3 months after she passed away, a medical breakthrough was made that would have directly benefited her particular mutation, giving her a chance to add years to her life. Sloan isn't a candidate for that particular drug but will be a candidate for one that is currently going through clinical testing.
Our battle with CF is daily as we balance a normal life with our CF life. As she gets older our CF duties will grow and her disease will show itself more and more to the public. As it stands now, she blends in well with every other baby. We have been so lucky to have had no time wasted to diagnose and really have been one step ahead of this disease so far.
It is no secret that we take every runny nose and every cough serious because there will be a day that that cough or runny nose makes its way to the lungs and cause a bigger problem than we are not willing to face.
During our pregnancy we tried to embrace and work through our fears and sadness so that when she got here we could be strong and make each day the best and most celebrated day to date. The truth is, we are still scared and we are still sad that this cross is ours.. or Sloan's to carry. It is heartbreaking to know we have seen the worst of this disease and have such a road to travel. We also know that we are blessed everyday and know that gratitude towards our blessings is the key to a joyful and rewarding life. Which, is what all parents want for their child, a joyful and rewarding life.
Please join us in our fight for our daughter and everyone else battling this disease. It is our hope that we can unite a community and claim true victory over this disease. We will not stop until we get there!!
XOXO, Jorde, JJ, and Sloan Scott
Cystic fibrosis is a devastating genetic disease that affects 30 thousand children and young adults in the United States. Research and care supported by the Cystic Fibrosis Foundation are making a huge difference in the lives of those with CF.
This year, we are walking in the Great Strides walk at Sloan's Lake on May 18th. Please help me meet my fundraising goal of 6,000 dollars by sponsoring me. Your generous gift will be used efficiently and effectively: approximately 90 cents of every dollar of revenue goes to support vital CF programs.
Making a donation is easy and secure. Just click the "Click to Donate" button on this page to make a donation that will support my team. Any amount you can donate is greatly appreciated. Your support will help fuel lifesaving CF programs.
To learn more about CF and the CF Foundation, visit www.cff.org.
Thank you for supporting Great Strides! Together, we can make a difference and “add tomorrows” to the lives of those with CF.