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So Close, Yet So Far Away….

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It has been a long time since we have seen something so incredible happen in the medical world in regards to a cure for a disease. Over the years, CF has seen some amazing breakthroughs in medical research and drugs that have provided a positive impact of the life of a CFer. We have seen great drugs to hit the market that are specifically created and designed to assist in fighting a cowardly, but strong and aggressive disease. We have seen the miraculous drug, Kalydeco, impact the lives of CFers in a way that makes CF insignificant. And when that wasn’t enough, we fought even harder, and are now on the bleeding edge of a second drug that will basically cure another 60% of the CF population. All of this happened because we not only have a great foundation that is fighting the fight while we sleep, work and try to enjoy our lives as normal as possible, but because of the great support we have from family, friends and strangers who believe in us and our cause.

The bad news to this is that we aren’t done yet. Every CF warrior has made a vow to fight until CF stands for Cure Found. It may be simple to sit back when a “magic” pill comes along and removes many of the daily struggles of living a life with CF, but I know through the bond we have developed with each other through our weak moments and times of grief, we will stand by each others sides until the Cure is Found for all. And you may wonder what happens then, but I can assure you that these CF warriors will pick up something else and fight just as hard.

This is where I take a step back from praising the accomplishments of the CF community because of one small girl that came into our lives almost 2 years ago. Through all of the media, excitement and anticipation of the new drug on a fast track through the FDA, there are families like ours who are still sitting on the bench. We can’t help but be excited, but we are also still waiting on our turn. You see, Sutton isn’t a part of the either group that has or will benefit from the miracle drugs. Her genetic mutations don’t fit the make up. The hopeful part of it is that the amazing group of doctors and scientists are working towards the next miracle drug. No one knows for sure when that will come.

As I sit here an write this, I can hear a similar background noise that I hear every morning and night when I am at home. The dull roar of the “tickle vest” as we call it, the cry of a small girl who just wants to enjoy being 2 without the tether of a machine, a TV turned up just louder than the roar of the tickle vest so that it can help serve as a distraction to the never ending treatments. I often hear that Sutton doesn’t “look” like anything is wrong, but this silent disease does a good job hiding itself. I think many times we don’t even see the disease, but its those small reminders that we notice that keeps up paranoid enough to stick with treatments for 2 hours a day.


This year I will be getting close to what was the median life expectancy of a CFer at the time Sutton was born. In the last two years, we have watched it grow to 41 years old which applauds the medical accomplishments of the doctors dedicated to CF. I can’t help but reflect on what it would be like to only live to 41 years old. In so many ways, I feel like my life is just getting started. I married an amazing woman 6 years ago. I have two amazing kids, but they are still so young. I started the career of my dreams. Thankfully, I don’t have any reason to place a median life expectancy on my life, but one has been placed on my child. That is probably one of the hardest things to swallow.

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We have a chance though. There is great hope in Sutton’s future. There is more than just a dream for a cure, there is dedicated research with proven results already taking place. We are at a place in time when it is even more important to fight for a cure to CF, however, we can’t do it alone. We need your help more than ever to keep the momentum going to make Sutton the next recipient of a “miracle” drug.

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On November 8, 2014, I will ride in my third CF Cycle for Life since Sutton was born as a part of Team Sutton Grace. Team Sutton Grace has grown from 2 people and now consists of over 100 people actively participating through The Great Strides Walk and the CF Cycle for Life. Team Sutton Grace has grown because of the great support of family and friends and the support system surrounding each of us. We like to think of all of you as a part of Team Sutton Grace because we can’t be a success without any of you. There is nothing that can ever express the thanks to each of you for all you have done to support us.

Anne Frank once said that No one has ever become poor by giving. I promise you the greatness of your gift is felt by adding another day for Sutton. The life expectancy has grown from 37 to 41 since you all started supporting us. You are adding more tomorrows. I am asking for your support again this year to help Sutton, help me add every possible tomorrow we can.

With Humble Gratitude,

Jeff, Brittany, Hiatt, Sutton and Team Sutton Grace

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Are you ready for a Miracle(child)!

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DSC_0084-001Good News! Sutton is working on becoming more than a star online, she is growing a name in Atlanta!

After Sutton’s story aired on Fox 5, there has been a growth in her public appearance requests. She is filling our schedule with other engagements and we might need a secretary to keep track of it all. She never ceases to amaze us with her addicting smile and happy attitude for everything she goes through. Each day is getting easier for us as we keep up with her routine of care and the same proves true for Sutton as we move forward. Our growth in followers for this blog is growing steady and proving to be a great channel of awareness for CF and Sutton’s story. Of course we want the world to know about Sutton, but the most important thing is that people know how her story fits into CF and more people are aware of it. We feel the momentum and want to keep it going for a cure. That cure is around the corner and we are going to get this thing fixed forever.

I’m guessing you are wondering what a Miracle has to do with all of this…Sutton was selected, following a nomination by a hospital staff member, to be Children’s Miracle Network “Miracle Child” for 2014! She will be one of four amazing kids to help represent the foundation that supports the hospital she is treated in as well as a fresh face for staff and employees to see in media throughout the CHOA Hospitals in Atlanta. This is such an honor and a great way for Sutton to raise awareness for CF, CHOA and Children’s Miracle Network. We look forward to sharing more of her story to others as well as her smile.

We recently shared Sutton’s story with a group of anonymous donors who built 70 bicycle for the CF Foundation here in Atlanta. The event is a team building exercise where 139 individuals are given a few hours to build bicycles for some deserving people. CFF was the recipient of these bicycles and will use them as a means of encouraging CFers to exercise. Exercise is an excellent way to increase lung function and also serves as a means of lung clearing from sticky mucus build up. Sutton is a little ways from a bike, but we are excited to see others have an opportunity to have fun while receiving therapy. After all, its better than sitting on the couch with a vest for 30 minutes!

Thanks to all of you for following our story. We will keep you all updated on events she is attending and how you might be able to be engaged. We look forward to a happy and healthy future as well as a successful future for CF, CHOA and Children’s Miracle Network.