Our daughter Gracie is our rainbow baby We were so excited to find out we were pregnant again, when we heard the heart beat, when we found out she was a girl, when we felt her move around, and most of all when she arrived. Our hearts grew 100 times in size and the meaning of love was taken to an even deeper level. She was perfect from the moment we saw her For this child, we prayed!! Being parents had been on both our bucket lists for a very long time and being her parents has been better than we could have ever imagined. Bringing her home from the hospital was amazing, she was perfect. She rarely cried, slept great, ate great, perfect! Nine days into parenthood we received a call that we never expected. We were told she tested positive for cystic fibrosis on her newborn screening and we needed to come in for additional testing. (In the state of Iowa it is required all newborns are screened for many different genetic diseases within 24 hours of life. And we thank God for this!) Cystic fibrosis is a rare, life shortening genetic disease. It effects the lungs and digestive system. There is no current cure to this disease. We have no history of the disease on either side of our family. At this point, I had 100% convinced myself there was no way our little lady had this horrifying disease!! Walking into the U of I Stead Family hospital the next morning was a surreal feeling. We checked in and were escorted immediately to a room waiting for us. There we sat, with fear in our hearts and tears in our eyes. This beautiful petite woman walked in the room in a gown and gloves. She had compassion in her demeanor and asked us, “Do you know why you are here?” To which we responded, “She tested positive for CF and we’re here for additional testing.” What she said next was something I never believed could be true... she said, “Normally that’s what this appointment is for, but because Gracie contains both the classic genes for CF, she 100% has it without additional testing needed.” Our earth shattered. Our hearts broke into pieces. We sat there holding our little angel with her big beautiful eyes, long eyelashes, happy little face and just cried. For the next 5 hours we met with the doctor, the nurses, the dietitian, the pharmacist, the physical therapist, and the social worker all telling us fact after fact of CF. They were compassionate and wonderful, but the facts are horrifying! We know God is with us, and is watching over our little lady! She's so perfect! She's such a content little baby and is so damn cute just makes her Mom and dad melt every time they see her she's our miracle baby, and we are so thankful for her! We know she's a tough little cookie and this will just be a little hiccup on her journey of becoming a star basketball player We I share our story, not for sympathy, but to raise awareness of Cystic Fibrosis! So many are unaware of this disease, so that’s what we are trying to change! There is a walk for cure May 4th in Cedar Rapids and in Des Moines May 18th. Ryan and I will be walking in both and will be trying to raise as much money as possible for the CF foundation! It truly is an amazing foundation, we know first hand. Gracie takes enzymes before every bottle to help her pancreas hold on to the nutrients, a multivitamin for malabsorption, a nebulizer to break up mucus, and does chest compressions 2x daily. The CF foundation pays for the remaining balance of her monthly medicines, which is a large amount even after insurance, sends us formula to make sure she is getting the nutrients she needs, and give us toys and books at each doctor visit! All while the majority of the money is going to research for a cure!!! There have been tremendous leaps in finding a cure and I know it will happen in Gracie’s lifetime-with your help!! Please come walk with us May 4th or 18th-mark your calendars!!! Please join our team and let’s blow this out of the water!!!! Our goal is raise $8,000 altogether!!! Let’s do this!! #amazinggrace
There are surely some people who werent aware that our daughter Gracie was born with Cystic Fibrosis. It’s a lung and digestive disease that there is no cure for, but researchers working with the Cystic Fibrosis Foundation have made some really good advances in the treatment in past years. These walks are to raise money for the CFF so they can keep trucking along to hopefully find a cure someday. There is a walk in Cedar Rapids and one in Des Moines that we are doing to help raise money. If anyone is interested you can join Team Gracie on the Great Strides website.
Join our team and help add tomorrows!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day just to breathe. We walk for them. Will you join us? To become a member of our team, just click on the "Join our Team" button. From there, you can make a donation and start fundraising.
By joining our team and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. We will not rest until all those with cystic fibrosis have a cure. The time is now. Together, we can conquer this disease.
Great Strides is a fun event that provides a fantastic opportunity for family, friends, students, and colleagues to come together to make a difference in the lives of people with CF -- join our team today!
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.