7 year old Reece loves to dance!

 

 

7 year old Reece is such a Gem!  She has cystic fibrosis, but it won’t stop her.  Reece says she “lives to dance”. She is doing tap, jazz and advance tumbling. Reece’s mom says “dance keeps Reece healthy, and helps boost her confidence and personality. She is becoming so strong and flexible”.

The Cody Foundation is honored to be a part of the happiness that is given to Reece with the opportunity to add dance to her lifestyle. You dance, Reece, “until your shoes run ragged”

Thank you to all of our donors who make this happen. It is because of you that Reece gets to do what she loves, and that is dancing. 

The Cody Dieruf Foundation offers Recreation and Fitness scholarships to those in Montana who are living with cystic fibrosis.

Meet Paige Dunn – Mother of the Month for March

Each year at our Mothers Retreat for mothers of Cystic Fibrosis children we get to meet some awesome moms. These mothers give us at CDBF fortitude, and the lasting friendships are so close to our hearts. Meet Paige Dunn from Utah, our March Mother of the Month.
 
Paige tells us her story.
 
We have been blessed with two beautiful babies, both who have CF. Aila was diagnosed at 3 weeks from the newborn screen and Wyatt was diagnosed at 1 week from a cord blood test.
 
Although this isn’t the path I imagined we would walk it has been such an extraordinary one. Extraordinarily hard but extraordinarily gorgeous! My sweet children have taught me to be present, to enjoy every moment and give love.
 
My personal spiritual/mental battle
with Cystic Fibrosis as a caregiver has opened my soul and allowed me to blossom in ways I didn’t know possible. The mothers retreat was a catalyst for my learning and understanding which is why I feel called to be involved with supporting my fellow CF Moms and why Martha and I have started a podcast just for CF Mothers!! The first episode of the “CF Mom Tribe” podcast will air next week! Watch for details.

CF Peer Connect

Raising Cody with Cystic Fibrosis, we did not have the opportunities that are being offered now. We missed out on all the new medications that extend lives, and we did not have the connection with the CF world that so many of you have.
 
The Cody Dieruf Benefit Foundation is proud to promote to you CF Peer Connect. You are not alone living with Cystic Fibrosis(CF). CF Peer Connect is a topic-based peer mentoring program for people with CF.
Ages from 16 and older.
 
It is known that Cystic Fibrosis can be a lonely disease. I know this, I lived it.
 
Through this program, those of you with CF can talk with and learn from someone who has gone through a similar journey. Please share.
 
cff.org/PeerConnect
www.breathinisbelievin.org
#breathe#cysticfibrosis#peerconnect#CFF#CodyDieruf

 

Hi, My Name is Tyler

 

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!

Chronically Salty

 

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.”

Our mission is to help spread awareness about Cystic Fibrosis through Chronically Salty, while also helping by sending funds to the Cystic Fibrosis Foundation or helping individuals who may need support to move forward toward better health.

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.

You to can help, go to chronicallysaltyclothing.com   
and purchase an item.  Chronically Salty Clothing will donate a part of the proceeds to “Saving Bridget Campaign” affiliated with The Cody Dieruf Benefit Foundation.
Chronically Salty Team
Tyler Cowley

 

 

Mother of the Month

Meet Lanor, our Mother of the Month of December.
 
What is in a name? Well be it told, Adaira is specially named with a story. In her moms words, “I never had a boy so I could use the middle name of Adair, after my dad and my grandfather. So I gave her the name Adaira. Needless to say, my dad was touched.”  Her name goes back to the 1800’s in family history.
 
We decided on the name after I talked to my grandfather before she was born. Shortly after we found out she had Cystic Fibrosis he told me that she was not the only baby it in the family born with CF. And he died before I had a chance to ask him any more about the family history of CF.
 
Adaira is the youngest of 5 in a blended family. Our pediatrician ran the test 7 times. In that same appointment we were introduced to our CF team and we were told that we will be going to the doctors office a lot.
 
Adaira’s Cystic Fibrosis Mutations has 2 rare mutations 621+1G>T and 2585delT.
 
Currently there is no miracle drug or therapy out there for Adaira. Adaira is now 8 years old and in 2nd grade.
 
Adaira loves being part of her Girl Scout Troop where she sold over 500 boxes of Girl Scout Cookies while sick. Adaira also loves to go camping with her family.
 
Adaira’s special friend Sydnee, encourages Adaira to to take all her medications and treatments. Adaira would much rather play than do all her treatments.

Saving Bridget

 

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.”

.

 

 

Saving Bridget Campaign

 

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

CDBF welcomes Robin Modlin-Presenter for “We Walk Together”

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.

May You Never Take One Single Breath For Granted.

May you never take one single breath for granted.

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.

on

https://barefootbabysite.wordpress.com

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”.