The Frey Life: Vlogging And Coping With CF Together

The Frey Life: Vlogging And Coping With CF Together

Peter and Mary Frey are a young couple just like any other, starting a family together. However, there is one thing that makes their family different from the average American household. Mary suffers from cystic fibrosis (CF), a genetic and chronic disease that causes the excessive production of mucus in the lungs, and for which there is currently no cure. Despite the difficulties of coping with CF, the couple lives their life with joy and gratitude and now they are sharing their video series “The Frey Life” on YouTube to help others with CF and raise awareness about the disease.

The Freys met at a local church in their hometown of Hagerstown, Maryland when they were toddlers. Peter, 27, and Mary, 26, grew up together and despite the fact that she was home schooled and he attended high school, they started dating. After both graduated from the Moody Bible Institute in Chicago, they got married in January 2011. Topics such as moving from home so that Peter could pursue his education, Mary’s hospital stays, daily CF life and treatments, and other developments such as the new addition of service dog Oliver to their family are all featured in The Frey Life videos.

Dealing With CF as a Family

Mary was diagnosed with CF at seven months old, just like her sister. As a result of the early diagnosis, the reality of the disease has been present throughout Mary’s life, and for as long as Peter has known her. “CF is an everyday battle, and because of that, we have had to learn to be flexible with our plans and everyday life. We sometimes have to cancel plans because my health is declining. We sometimes have to spend holidays or anniversaries in the hospital, but we figure out how to celebrate no matter where we are or what I’m hooked up to. We have learned that we can be a team and get through anything in life as a family, not matter what the day looks like,” said Mary in an interview with Cystic Fibrosis News Today.

Laughing is one of the ways that the couple overcomes the disease’s difficulties. Living with cystic fibrosis means that Mary needs to take a full regimen of daily treatments and is regularly hospitalized for lung infections. These limitations and setbacks can lead to frustrations and difficulties for Mary, such as having to eventually stop working. “I used to work as a nanny, and I loved my time with the kids I worked with. When my healthcare became more time consuming and my lung function and overall health became less stable and required more therapy, treatment and hospitalization, I was unable to continue working,” she explained. However, she sees her marriage as a critical support system that helps her through the hard days.

Taking care of her lungs is now Mary’s top priority and she commits most of her time to maintaining her health. While the disease impacts their life as a family, the couple’s closeness also influences how Mary deals with the disease. “As a family, we have learned that we can make it work. Being a one income household, and learning what life looks like with one person who needs extra care. Each season of life is different… We have learned to live with the natural limitations that come with CF, while not focusing on the limitations but enjoying each day, no matter what it looks like. Laughing doesn’t make the reality and pain of CF go away, but it helps us enjoy the journey,” Peter and Mary said.

Vlogging also entered their lives as a way of keeping in closer touch with their families. Last year the couple moved to Scotland so that Peter could continue his Ministry training. The daily YouTube videos were originally intended to document their journey and stay connected with friends and family while abroad. However, in just a few months “The Frey Life” YouTube channel had reached over 10,000 followers who want to share their adventures and struggles with CF.

 

Raising Awareness For CF

“Within the first few months of vlogging, we started realizing that more people than just our family were interested in keeping up with our journey,” explained the couple. “We started getting to know other CF patients from around the world through our videos, and our audience of CF patients, other people with Chronic illnesses, and many other people began to walk with us through our daily life. Because of this, we started focusing our videos on raising awareness for what everyday life with Cystic Fibrosis looks like.”

Last January, the Freys had to return to the U.S. due to Mary’s declining health and spent a month at Boston Children’s hospital. They continued to capture these moments on their YouTube channel, and came to realize that the videos that were shot in the hospital are the most successful ones on YouTube. “We show the good, the bad and the ugly when it comes to life with CF. We take our viewers with us when we go to the hospital, procedures, and also on the fun and exciting things in life,” said Mary.

In addition to sharing their lives on screen, the Freys recognized that there is a great need in the CF community to show what life is like for people living with Cystic Fibrosis on a daily basis. One of the couple’s main goals is to raise awareness about the disease and tell others that, even though CF patients might look healthy on the outside, their bodies are fighting a constant battle on the inside. By showing both the ups and downs of everyday life with CF, Mary and Peter Frey aim to bring encouragement to others fighting the disease, and show that there are ways to find joy along the journey.

“It has been amazing to get to know other CF patients through this youtube channel. Out of our 10,000 or so followers, a portion of those viewers have CF, other chronic illnesses, or know someone with CF, and we’ve found that a large percentage of our viewers have started following our journey simply because they wanted to know more about CF!  We have the privilege of receiving daily emails, comments and messages about other people living with CF and how they get through each day,” they added.

In addition to the comments and messages, Mary and Peter Frey also find others ways of interacting with their viewers. The couple recently created a video called the “Cystic Fibrosis Tag” where they challenge others to answer five questions about what it’s like to fight CF everyday and how to help bring awareness to CF. “It has been such a fun journey to watch about a dozen other CF patients do this video and share it with their friends and family! We look forward to seeing more and more CF patients do this video as time goes on!”

A Unique CF Helper

Mary and Peter and the two most frequent stars of The Frey Life videos, but the couple has recently started to share the spotlight with service dog Oliver James, their new family member. Mary’s daily routine includes Chest PT, Vest therapy, Nebulizers, and many pills, while she also needs IV antibiotics every ten weeks. “I am usually hospitalized every few months as well.” Despite all these efforts, Mary’s health started to decline faster after their marriage in 2011.

In 2012, “we began applying to service dog organizations and talking with directors about my health and if a service dog would be beneficial for me and my health. We had confirmation from a few different organizations, and continued to process our applications. Soon, we were told that the waiting period for a mobility assistance dog in a breed that does not shed would be close to 5 years wait.” Since five years would be too long, the director of a local organization suggested that the couple find a candidate and begin the training themselves.

This is how Oliver entered the Frey’s lives, still just a puppy. “It was April first of 2013 that we began his puppy raising. He was all puppy but enjoyed wearing his “In Training” vest and we began exposing him to all sorts of things he might encounter in this world as a working dog,” said Mary. The Mobility Assistance Dog or CF Service Dog training was finished in Chicago and last March he passed his Canine Good Citizen and Public Access Tests.

Now, Oliver is always with Mary, and his tasks include forward momentum when going upstairs or walking, counter balance when Mary is dealing with side effects of medication, carrying things, bracing for Mary to hold on to in a coughing fit, bringing medication, being aware of blood sugar drops, pulling Mary to safety when she is swimming and in a coughing fit, seeking help when needed, and alerting Mary to sounds when she is using loud therapy machines.

“Having my husband and my service dog by my side, I am grateful to say I can live life to it’s fullest and enjoy each adventure… The good days and the bad ones. My husband and I really view my healthcare as a team effort, so whatever it brings our way, we will walk through it hand and hand with Oliver at my side!” concluded Mary Frey.

Find out more and get in contact with Mary and Peter Frey through their YouTube channel The Frey Life. In a similar story, read about CF vlogger Larry Brian, who also suffers from cystic fibrosis and is dedicated to bodybuilding to fight the disease. The 25-year-old patient is also the star of a YouTube channel called Defy to Breathe, in which Larry Brian shares his thoughts about nutrition, exercise and other topics concerning patients suffering from CF.

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