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 Taralynn Horton – Mother of the Month for June

Meet our Mother of the Month for June – Meet Taralynn Horton and her family.

Tara says, At three months our oldest son was diagnosed with Cystic Fibrosis. A few years later that diagnosis was taken away and we took our luck and ran for the hills feeling blessed. 14 years later all that changed and not only was my son again diagnosed with CF, but my 3 other kids as well.

Our lives have now changed forever. Whether it be for better or for worse, we will wait as God’s plan unfolds. It has not been easy keeping up with appointments and treatment schedules, but my kids don’t let their new disease stop them from living their lives. In fact I would argue that because of the disease, my kids are making an extra effort to live their lives to the fullest.

My oldest has since started a YouTube channel for his music and plans to expand further on that. My youngest son now goes to Friday Night Magic almost every week and wins something new almost every time he goes. My girls spend their lives now doing ballet and ice skating and I know as their mother I may be bias but they are truly amazing at what they do! Our kids are Portland 17, Memphis 15, Phoenix 7 and Brooklyn 6.

If I could, I would take the disease away from them in a heartbeat, but seeing my kids now and how far they’ve come I would not trade their past because I know that they have a bright future ahead of them. I am not just a proud mama but the proudest mama. I love my kids and know that only good things are in store for them.

Meeting up with other mothers of children with CF in Montana at the “We Walk Together” mothers retreat is the highlight of my year. Being with other women, if only for a short time, that know-I mean truly know what you are going through is so incredibly healing and gives me the strength I need to be the best mom I can be.

The Cody Dieruf Benefit Foundations 3rd annual retreat is a beautiful 3 day retreat at the 320 ranch to be held in September of 2019.

www.breathinisbelievin.org

Meet Elaina Pyke – Mother of the Month of May

 

Meet Elaina Pyke. Elaina is one of our special mothers who has attended our “We Walk Together” Mother’s Retreat. It is always so inspiring to read the stories of our mothers as time passes. This is not only Mothers Day month but also CF Awareness Month. Happy Mothers Day to all of our moms of CF children.

My name is Elaina, I’m a single parent of 3 incredible children Lillyan 15, Olivia 8 and Mario (aka Baby Mario) 4 years old. Mario has Cystic Fibrosis (CF).

Mario’s father and I found out we are CF carriers after prenatal screening during my pregnancy with Olivia. She does not have CF, but inherited a CF trait. Baby Mario was diagnosed prenatally at 26 weeks via amniocentesis results came back positive down to his genetic mutation Homozygous Delta F508 which affects the digestive and respiratory system. The diagnosis was later confirmed with both new born screens and sweat test.

Life with CF for us isn’t black and white, we have 2 crazy households that seem to function at their best. We’re living and learning our way of life with CF along the way. Hell yes our routines can be hectic, treatments don’t always occur at the same time of day, but hey, they get done.

Reminding ourselves to have grace is often forgotten but so important for us to move forward. I learned the importance of giving myself grace during the 2017 Montana We Walk Together Mothers retreat. I’ve also sparked a passion to become more involved with the CF community, but I wasn’t sure how and when…

Once 2019 came around, multiple opportunities arose and I decided to take advantage of them. I’m extremely excited to be a member of the Mary Bridge CF Parent Advisory Board and looking to joining the Mary Bridge Hospital Parent Advisory Council as well. I find fulfillment in advocacy and I’m looking forward to undertake these positions as a CF mother and representing our community the best way I can.

With all these opportunities evolving in my life I’m proud to say I’m still connected to the best group of women I ever met on our Montana Mothers Retreat FB group. It’s reassuring to know I’m not alone and we’re all traveling one hell of a journey with CF together.

Meet Martha Modawell – Mother of the Month for April

 

 

My name is Martha I have 2 daughters with Cystic Fibrosis(CF) and a son who is a carrier. I have been married for 14 years to my hubby Colt who is a Nurse.

About me….wow a lot I can say, let’s start with my journey of the CF world.

I had my oldest very young and then my second soon after, they where Not diagnosed at birth, they where diagnosed after years of questions. Sierra was almost three years old and Maddie was 18 months. They where so small and looked okayish… When they were diagnosed  Colt and I just felt like our world was crumbling at our feet. I became a addict, Colt withdrawn.

Finally we got it together and now we stand firm together but it took us coming together.  I have since become a Yoga teacher, & yoga therapist. I bring the healing of Yoga to my family and then to the CF community.

I LOVE sharing my love of healing through Yoga at the Mother retreats, one in California and one in Montana.

I have been blessed with  two daughters to teach me the importance of being present and knowing how love truly is the most healing power for the heart and soul.

I now teach yoga for CF mothers retreats, online for the CF community, & I do a Podcast for CF moms with Paige Dunn from Utah.   I travel to CFRI conference in California to teach yoga to those attending.   I love this CF community.  We are tiny but so mighty, and to be part of it….it’s Magical!  You truly see the darkest of times and because of it, we see the Brightest of light and love.

 

 

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.

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.”

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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