Why We Give

We decided to make it our mission to help raise awareness and funds for the cystic fibrosis foundation after our sweet bryce was diagnosed with cystic fibrosis (CF) at two weeks old.

a portion of the proceeds from your purchase goes towards the Cystic Fibrosis Foundation in helping find a cure for CF.   

Meet Bryce!

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A spirited 1-year old, who was diagnosed with cystic fibrosis at 2 weeks old, when his newborn screening came back inconclusive for CF.  

This amazing little boy is the son of Sheli and nephew of jeanna and randi

(co-owners of Mantra Laces

 click here to learn more about us.)

What is Cystic Fibrosis?

CF is a rare genetic disease that affects the Lungs and Digestive system.  The Body produces thick and sticky mucus that can clog the lungs and obstruct the pancreas. 

People with CF inherit two copies of the defective CF gene,  1 copy from each parent. Both Parents must have at least one copy of the defective gene. People with only one copy of the CF gene are called, "carriers", but they do not have the disease.  

Each time two CF carriers have a child together the chances are:

    25% (1 in 4) the child will have CF.  

50% (1 in 2) The child will be a carrier but not have CF.  25% (1 in 4) The Child will not be a carrier and will not have CF.

 

Treatments and Therapies

Bryce receives chest physical therapy for 25 minutes

2 times a day.  This is performed by tapping a little cup in 6 different spots around his chest, ribs, and back. Until he is old enough to wear a vest that will shake and loosen the mucus, his parents perform the daily chest PT. 

He also Takes enzymes (currently 7) before each meal or before he nurses. This helps him to absorb nutrients.

Exciting News!

On October 21, 2019 a new drug was approved by the FDA. 

Trikafta, is a highly effective therapy for the underlining cause of Cystic Fibrosis.  It is approved for use in people with CF ages 12 and older, who have at least 1 copy of the F508Del mutation, which Bryce and 90% of people with 

CF have.  

It is an extremely exciting step for the CF community.

 

Today Bryce is thriving. He loves smiling, playing with his big brother Rowan, eating and crawling all over the place. His diagnosis was life changing, but with the support of his family, it isn’t changing his life! He continues to amaze his doctors with his growth and his overall good health. 

© 2017 by Mantra Laces