Adaira is the youngest of 5. She has one half-brother and 3 half sisters, all older than her. As a family, Cystic Fibrosis was new to us. Neither Randy’s nor my side of our family knows of Cystic Fibrosis in the genetic past, nor do they talk about it.
Adaira’s journey with Cystic Fibrosis may be different from other patients with Cystic Fibrosis. Adaira was born with 2 rare mutations of Cystic Fibrosis. At first, they could only find one of her mutations, and then the other mutation followed. Both of her mutations are Protein Production Mutations, also called Class 1 mutations, which result in little to no CFTR protein being produced. This is due to problems that occur when the CFTR gene is assessed, or read, to make protein. In a study in 2022, mutations of these types were found in only 10% of the Cystic Fibrosis population.
Adaira does not qualify for any gene modifiers like Alyftrek, Trikafta, Symdeko, Orkambi, or Kalydeco. Adaira is part of the Cystic Fibrosis population that does not have a drug like this.
 
Although Adaira has been relatively healthy most of her life. She has had 2 two-week hospitalizations. She has participated in 3 studies for Cystic Fibrosis. They are not technically drug studies. She has participated in a Mindful study at MSUB for children with Chronic illnesses.

Through our journey, Adaira has ADHD, generalized anxiety disorder, and double depression. Adaira’s clock is turned around. For the last few years, she sent many spells where she was up for more than 36 hours at a time, or she was up all night and asleep all day. This has made it difficult for her to maintain going to school regularly.

This year, Adaira was in 8th grade and so badly wanted to be normal. She wanted to go to school like all teens mostly do. The first semester, Adaira did amaze, she did not miss many days at school, and after Christmas, her school attendance was not as good. Before, she was getting to school on time, missing morning treatments and medications, which ended with losing weight and gaining a cough. Which messed up her sleep schedule again.

Adaira is going to be 15 in the fall. She is planning on being a Freshman, and she has signed up for ROTC, which will replace her PE credits.

We, as parents, are always looking for answers. Is the Cystic Fibrosis creating ADHD, generalized anxiety double depression? We will never know without the help of the Cystic Fibrosis Foundation. There is a lot of research going on right now, and we don’t want to let anyone be left behind like Adaira.

Please consider donating to Adaira’s Angels. If you can not donate, please come and walk with us on May 31^st from 9 am to noon at Zoo Montana.