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 I became a addict, Colt withdrawn.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