We got the wonderful opportunity to speak with Mayla’s mother, Felicia, about their Cystic Fibrosis [CF] Journey. Her story is shared below.

“I am Felicia, the mother of Mayla. Mayla is 1 years old and has CF. It is just us 2 conquering this CF journey together.”

When did you first find out that you were going to be the parent of a child with CF?

“Mayla was 3 weeks old when she was diagnosed. I had no clue what CF was prior to her diagnosis. When Mayla was born, she was pretty small for a full term baby. Due to her being so small, I had to take her to the pediatrician every other day to have her weighed. After 3 weeks of rapidly losing weight and having a bowel movement 5 minutes after eating, her newborn screening test came back with indications that she has CF. I took her to have the sweat test done and sure enough she has CF. The 3 weeks leading up to her diagnosis was frustrating and many tears were shed over not knowing why she couldn’t gain weight.”

What does daily life look like as caretakers of a child living with CF? What are your greatest challenges? And greatest joys?

“Every day consists of treatments and meds. On top of that, I am always checking foods with calories and how to make them higher. Every day I check the air quality to know if we can go outside. I also disinfect an area Mayla touches or plays with every day for her health.

My greatest challenge of being a caretaker of a CFer is food. I am not a fan of cooking and figuring out high calorie foods. It is also challenging making Mayla do her vest when she doesn’t want to do it.

My greatest joy is watching her grow. After starting enzymes she gained weight extremely fast and is still doing decent in the weight area. I also love seeing Mayla learn how to tolerate her meds and vitamins, she can swallow 4 pills at a time and doesn’t fight me with any meds anymore.”

What are some life lessons or perspectives that you have learned on this CF journey?

“I have learned so many things in this short year. The biggest one is to set boundaries for Mayla’s health as early as possible. My family and friends are on board with what my boundaries are to keep Mayla as healthy as possible. I have also learned to not be afraid of others’ differences regarding health. Just because they seem healthy doesn’t mean they don’t have health problems.”

If you were to give some advice to a new CF parent, what would it be?

“Community and support has saved me with Mayla’s diagnosis. Connect with as many CF parents and CFers as you can. All ages, all over the world. I have found it extremely helpful to have a connection with moms who are new to the CF life but also moms who have older CFers so I can ask for advice.

ADVOCATE – no one knows your child better than you. If something doesn’t seem right, ask. If you don’t understand something, ask. Be the loud voice for them.

Feel the feelings. Some days are easier, some days are extremely hard. Some days you are hopeful for a cure other days you’ll be angry, sad, frustrated about the CF. It’s okay to have those days but don’t dwell on them.

Ask for help. If that means ranting to someone, do it. If you need someone to bring you dinner, ask. The first few months are extremely tough and overwhelming with learning this new life, so don’t be afraid to ask for help.

Take care of your mental health. If the caregiver is in a mental funk, it is so much harder to care for the little CFer.”

Anything else you wish people understood about raising a child or children with CF? If you think of any other questions I should ask, please feel free to add.

“I want people to stop saying how normal or healthy she looks. It takes so much time and effort to keep her healthy and ‘normal’. Instead, ask questions on the disease and their specific mutations. Not every CFer has the same symptoms and is different for everyone. I want other people to realize how incredibly strong CFers and their caretakers are and despite this horrible disease, it doesn’t mean they can’t live a great life.”

 

Thank you for sharing your story, Felicia!