Hi, my name is Tyler, It’s interesting how hard it is sometimes to tell people I have Cystic Fibrosis. I don’t hide the fact that I have CF and I like telling people about it when they have questions, but for some reason if people don’t know I have it I don’t like talking about it. I don’t like feeling that people view me differently, I like feeling the same as everyone. However, the truth is that I am different. I have more things I need to do to try and maintain my health and that’s ok. It’s ok to feel self conscious and to feel insecure sometimes. We all go through ups and downs and it is never weakness to recognize that we aren’t perfect. With each passing year, the more I realize that everybody has something they are dealing with, some things you can see and others you can’t. We are all imperfect people and we sometimes forget that. It’s ok to go through tough times, it’s ok to feel sad, the most important thing is to remember that you are loved and can get through it. I hope we can all be more caring and understanding of each others individual hardships. We are all in this together!
My name is Tyler Cowley and I have Cystic Fibrosis.(CF) I started an Instagram page to help people feel like Cystic Fibrosis is manageable, even through tough times. If you would like to see the page, it is @mycflife.
9 months ago, Myself and a team of people started a new business called Chronically Salty chronicallysaltyclothing.com in hopes that we can bring hope to those with Cystic Fibrosis and create a community of people who know that they are supported in this lonely world of Cystic Fibrosis. We at Chronically Salty want to inspire people to get out and get active to obtain good lung functions. The entire idea that inspired Chronically Salty was linked directly with Cystic Fibrosis. When people with CF sweat, it is extra salty, making them “chronically salty.”
Right now we know of a 14 year old gal in Butte, Montana who needs to be evaluated for double lung transplant due to her Cystic Fibrosis. Since I have CF, I know what it is like to walk this journey and I want to help create awareness of CF and inspire others to help in this process. At Chronically Salty, we wanted to help support Bridget and her family an any way possible because everyone deserves a chance to live a happy and healthy life.
Sierra has Cystic Fibrosis. She is 12 years old and is on day 7 of her hospitalization due to a drop in lung functions. Sierra lives in Boise, Id. To make good use of her time, Sierra decided to make bracelets. The hospital staff started to purchase them. Sierra learned of our “Saving Bridget” campaign. 14 year old Bridget Mallo from Butte, MT is going to Houston Children’s Hospital for an initial evaluation for a lung transplant on January 6, 2019 and returning on January 12, 2019. Sierra has decided to sell her bracelets to help Bridget. All funds raised through the purchase of her bracelets will be used for Bridget. They come in all shapes and sizes, adult/child, and you choose your color. They are $5.00 plus $1.00 for shipping.
Place your order and help Bridget. Click the donate button on our web page and be sure to type in message, Sierra’s bracelets. Your size, and your color.
Sierra is an amazing young gal who wants to be a part of doing something good. She says, ” We need to help each other, as a teen we don’t get the Normal Life”.
If you don’t want a necklace, you can still donate to our “Saving Bridget” campaign.
From Idaho to Montana, Sierra says, “you are not alone, Bridget.”
George and I know to well what it was like when we had to have a lung transplant evaluation for our daughter, Cody. The transplant wait list was to long and Cystic Fibrosis took her life.
14 year old Bridget has a chance.
The transplant decision is a complicated one and involves input from a lot of people. Not always after an initial evaluation, are you put on the list, and if you are, you wait, wait for a donor.
The evaluation process is carefully coordinated to meet the specific needs of Bridget’s health history. Bridget will meet with a team of doctors and auxiliary staff.
Bridget leaves on January, 6, 2019 for her initial evaluation. The Cody Dieruf Benefit Foundation asks that you gift a donation to help Bridget in her travels. We have set up an emergency fund so that we are prepared as we never want to deny anyone a chance at life.
You may mail in a donation to P O Box 6044 Bozeman, MT 59771 or donate online at www.breathinisbelievin.org
Introducing beautiful Robin Modlin, MA
I am a mother of a Cystic Fibrosis child. My daughter, Anna is 37 and had a double lung transplant 8 years ago. My life changed when she received this miracle. Having been actively involved with the Cystic Fibrosis Research Inc,(CFRI) community for so many years I wanted to give back by designing a CF mother’s retreat called Embrace. I am honored to also be included in The Cody Dieruf Benefit Foundation Mothers Retreat held in Montana, We Walk Together. It is my passion to see CF moms come together in community and learn to care for themselves.
I am also a mosaic artist and a SoulCollage® facilitator. I believe we can create beauty and art out of our most difficult times. With an inward eye and creative bent I enjoy sharing collage and other participatory projects with others for personal healing.
Life has been very generous to me. I also have a beautiful daughter, Sara who is now a physician and a wonderful husband, Doug. I am so grateful and I know that CF has shaped me and my entire family by teaching us so many valuable lessons of love and compassion.
Thank you, Robin for being a part of our We Walk Together Mothers Retreat.
To be grateful for each breath, is something we should practice every day. Not everyone has the ability to fill their lungs with ease. I’ve grown up knowing that. It is because of Cystic Fibrosis, that I feel so vastly that my lungs should never be taken for granted. Every breath, every inhale and every exhale. The way my respiratory system is so intricately and beautifully made. My body, for being healthy and carrying me throughout my journey of life. I refuse to not practice gratitude. To be grateful, every second, for another breath, every day for another day to experience life. I am grateful.
We should not take moments for granted. We should not take our time here, on this earth, for granted. We should not take our bodies for granted. We should embrace every second. We should inhale the goodness and the grace we have of another day of life.
Today, I will bask in the goodness of another day. I will be grateful. I will not take a single breath for granted. I will take my body as high and low as it can go. These moments, this life and my body- are not forever. I will make every second as beautiful as I possibly can- however I choose to.
Today, I am grateful for each breath.
18 year old Madison Ivey never got to grow up with her cousin Cody, who passed away from Cystic Fibrosis, but she holds her close to her heart. From a very young age, Madison would see a butterfly or hear a song and would know that it was Cody making herself known. She says that, “I feel that Cody is always giving me a sign, leading me to believe that I am on the right path”. ” Madison says that “Cody is her angel on this earth, always dancing to her own beat of the drum”.
Attain Health was created in 2016 through the collaborative efforts of Mike and Kat Porco from Red Lodge, Montana.
Attain Health empowers patients with cystic fibrosis by partnering with them to develop the skills necessary
to optimize daily care and regain control over their health. Attain’s platform of Integrative Health
and Physical Performance Coaching offers clients the opportunity to set personal health goals,
develop implementation plans, establish positive habits and overcome inevitable setbacks to
achieve their vision of health.
Attain Health has served over 125 members of the cystic fibrosis community.
Together, we can make a world a better place.