Author Archives: jbburnett

Sutton had her first pediatrician visit today. It was successful in many ways. There were no major concerns, however her weight was much lower than last week. When she was born she weighed 7lbs 6 oz. Her weight dropped to 6lbs 12oz in the hospital but she was making gains before we left. She was 6lbs 15oz at the CF clinic when we visited, still making progress. When they weighed her at the Ped office, she was back down to 6lbs 11oz. We return to the Ped office on Thursday for a weight check. We are praying for some weight gain.

“65 Roses” is what some children with cystic fibrosis (CF) call their disease because the words are much easier for them to pronounce.

Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary’s 4-year-old son, Richard, listened closely to his mother as she made each call.

The Weiss brothers, Richard, 5; Arthur, 7 and Anthony, 16 months.

After several calls, Richard came into the room and told his Mom, “I know what you are working for.” Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, “What am I working for, Richard?” He answered, “You are working for 65 Roses.” Mary was speechless.

He could not see the tears running down Mary’s cheeks as she stammered, “Yes Richard, I’m working for 65 Roses.”

Since 1965, the term “65 Roses” has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The “65 Roses” story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.

65 Roses® is a registered trademark of the Cystic Fibrosis Foundation.

Updated 09/19/06

We welcomed our most precious daughter, Sutton Grace Burnett, into the world on 10-14-12. She came to this world and immediately showed us how much we could actually love another child as much as we love our boy Hiatt. She doubled the size of our hearts and gave us an overwhelming joy the moment we first saw her.

We arrived home on Thursday, Oct 18, after a few days of recovery in the hospital for Brittany and a little bit of weight gain for Sutton. We got settled and everything in place to start our lives together as a family of four.

On Friday, Oct 19, around 10:30am, we received a call from our pediatrician letting us know that Sutton has the genetic disease, Cystic Fibrosis. As we hung up the phone with our pediatrician, Brittany and I just held each other and our baby girl with an overwhelming pressure of emotion as we began to accept our girl with a challenge to her life. Around 11:30, we received a call from the Cystic Fibrosis Center at Children’s Healthcare/Egleston Hospital here in Decatur. By 12:30, we were sitting with Sutton in our arms in the office of the clinic beginning our journey together as a family to fight CF. We met with the entire team at the clinic– doctor, nurses, nutritionist and therapist and learned that they will be a huge support to us. They immediately referred to us as a team. The doctor even came into the office on his day off, just to make sure we knew they were there for us, all of the time. We learned the basics of the disease, how it affects most CF patients, what we should expect as we get started and how we can begin treating Sutton immediately to help keep her healthy and strong.

As our emotions ride a roller coaster of hope, tears and exhaustion, we begin to accept this as our new normal. We will spend a lot of time learning. We were told that every single CF case is different and that we will have to learn about Sutton’s unique case and how we support and care for her. We have a lot to learn, but we will become the most knowledgeable we can about CF and make sure we do the best we can at taking care of our Sutton. We have pledged to spend any amount of time or resources to care for her and give her the most quality life we can give her.

We have had a few people from our family ask how they can support us and the best answer is that we don’t know yet. This is all very new to us, and while we knew that CF was a possibility, we purposely did not do any research or preparation as to not overwhelm ourselves before she was born. Sutton had a 25% chance, as did Hiatt, of developing CF and as you all know, Hiatt does not have the disease. As we jump into our “new normal” lives dealing with this, we mostly ask for your prayers and moral support. We know that as Sutton grows and we grow with her, we will all need encouragement. I am sure Sutton will become frustrated and discouraged as she gets older, but we will do everything in our power to keep her motivated to keep up with her treatments.

Brittany, me, and our immediate families are already discussing how we can become involved in the CF Foundation as this is the major source of advancement towards a cure and improvements in treatments and medicine. There are many opportunities that we have briefly read or heard about, but I am sure you will all hear from us moving forward about ways to support Sutton and other CF patients to help cure this disease. There are several types of fundraisers and events throughout the year that help to raise money and awareness towards a cure.

We are so very thankful that we have each of you in our lives. We are privileged to be Sutton’s parents and thankful for a beautiful baby girl. We thank God for our blessing and continue to pray that he will answer our prayer that Sutton will be a healthy girl. We are looking forward to the milestones that every other girl encounters in her life and being a huge part of them. We look forward to having you all as part of them as well. Thank you in advance for your support and prayers. We will continue to update you on a regular basis.

Love,

Brittany, Jeff, Hiatt and Sutton Grace Burnett