Fellow Travelers

When people think about traveling, they often consider the sites they want to see, where they are going to stay at night, and the activities they’ll do during the day. But a great part of travel can also be the people that you meet along the way. Since you can’t plan this part out, it always comes across as an unexpected surprise. I decided to write a post about a family that is living at the Sky Valley resort where I work, because, they’re just so darn amazing. This is a longer post, but well worth the read.

Once upon a time…

Bob and Holly met online while they were living thousands of miles apart. She was in the Chicago area, while he was enjoying life in San Francisco. Despite the distance, they enjoyed communicating with each other and decided to meet after two months. Bob planned to fly out to Chicago over Thanksgiving, and on the day he was set to arrive, he sent a bouquet of lavender roses to Holly’s work. He later explained the significance of the flowers: “Lavender roses represent love at first sight, which is what I was hoping would happen when I saw you.”

So, needless to say, Bob is very romantic and a smooth operator.

His genuine kindness and romantic side were not lost on Holly, who claims she knew he was “the one” at the end of their first meeting. Driving Bob back to the airport, he handed her toll money, and “I knew from the way he placed it into my hand.”

*Swoon* Am I right?!

The next month she flew out to San Francisco and interviewed for a job, and 3 weeks later she was on her way out to California to be with Bob. Perhaps it was the lavender roses, which she later used in her wedding bouquet, or perhaps it was fate- but Holly and Bob were just meant to be. Since they were in their mid-30’s when they met, they did not wait long to expand their family.

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Holly and Bob were thrilled when they discovered they were expecting a baby, due to arrive in September 2006. But it was a routine 16-week diagnostic test that stunned them. Holly was at work when she received a call from her doctor’s office informing her that the fetus had cystic fibrosis (CF). A turmoil of emotions set in as she called Bob to share the news. That night when Bob came home from work, he had a bouquet of lavender roses in hand. “No matter what, I know it will be love at first sight when I meet our child.”

Cystic Fibrosis

A little basic info: back in 1980, the life expectancy for a person with CF was less than 20 years. Major advances in treatment came along in the 90’s, and the current life expectancy is now up to 37.5 years old. However, many do not make it to that point, as a common infection can quickly lead to breathing complications and organ failure.

With the help of genetic counselors and a meetings with Stanford’s top CF doctors, an aggressive treatment plan was in place before Maggie Faye even arrived. She received her first treatment at 7 days old- a mix of vitamins and enzymes the size of strawberry seeds, rolled on to the nipple of a bottle during feedings. At two weeks old, she began regular breathing treatments, and at four weeks she started on the medication Pulmozyne.

When Maggie Faye turned 6 months old, she had her first CT scan. Four years later, her doctors performed a controlled ventilated CT scan. For anyone getting lost in the medical jargon here, this is when they put someone under anesthesia and fully inflate the lungs in order to get a clear image of them. It is a risky procedure on someone so young, but was going to reveal, in detail, if her lungs were healthy or not. Fun fact: Maggie Faye was the first child to ever undergo this procedure. With a bronchoscope team standing by, her doctors made history and it was filmed for future teaching purposes.

These days, Maggie Faye is a sweet and intelligent 11-year old. Although she still has CF, and takes many medications and breathing treatments on a daily basis, you wouldn’t know it unless someone told you. She has been taking part in a clinical trial for a medication that was previously not approved for children- Orkambi- for the past two years. She has the “Delta F 508 times 2” genotype (a fact that Holly rambles off effortlessly), which is the most severe, but also the most researched genotype for CF. It is clear that Maggie Faye’s doctors and parents have an attitude of aggressive treatment and furthering research, which has ultimately benefitted her health, and the health of many others with CF.

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Pulmonary Function Test

Baby #2?

Since Bob and Holly had their first baby late in their 30’s, they wanted to make sure their sweet daughter had a sibling, so she wouldn’t be alone when they passed away. Knowing that both of them carry the CF gene, any offspring would have a 25% chance of having CF, a 25% chance of being unaffected, and a 50% chance of being a carrier. Just like Mendel’s peas- yay genetics!

Holly and Bob decided to use in-vitro fertilization (IVF) to conceive. 13 eggs were harvested, fertilized, and then tested. NONE were unaffected (Damn you and your peas Mendel!). All 13 were either a carrier, or would have CF. Since being a carrier has no negative health consequences, 4 were recommended for implantation- two males and two females. As the doctor dimmed the light and began the implantation procedure, Bob held Holly’s hand and began to sing Marvin Gaye’s Let’s Get It On. Classic Bob!

One embryo proved to be stronger than the others, and in November 2009, Eleanor Dorothy was born. The family was complete!

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Part Deux- A Family with Purpose

In March 2017, Holly was in Washington DC for her annual trip to advocate for the CF community. She is very spiritual, and seeking strength and guidance, she took a side-trip to her favorite labyrinth. It was there that she got the call from Bob, saying that he had just been laid off. Although the news was difficult to hear, she credits the labyrinth for helping her feel calm and confident that all would work out in the end.

After a few stressful months with no luck finding new employment, the family decided to create a new family purpose. “To push through fear, to live our best lives while helping others, and bringing awareness to and raising funds for the CF community.” They agreed to re-define what “success” would look like for them, and buck societal norms and expectations.

Trial Run

Before pulling the trigger on their new life vision, they took a trial run. Maggie Faye had won a national song writing competition, placing 1st in South Carolina and 8th in the country! She was invited to walk the red carpet at the award ceremony in Las Vegas, NV. They packed up and took an extended road trip across the country. Although each family member had their own ups and downs on the trip, they got through it together.

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Just Do It

Following the road trip, it did not take long to sell their house and take off in search of an RV to call home! Originally searching for a Class C (small motorhome), they ended up finding a 25-foot TT (travel trailer) at the World’s Largest RV Show in Hershey, PA. When the 4 of them walked into the trailer for the first time, Holly got goosebumps and the girls pointed out that the rainy, cloudy day cleared up and the sun started to shine. They knew it was meant to be!

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Yup, all 4 (plus their dog Willie) live in a 25-ft trailer!

I can personally relate to the pressure of buying an RV first, and then hunting down the right truck. Luckily, a Holly’s friend’s brother’s friend was selling a truck down in Georgia, and it was perfect for towing their new home. I’m a big believer in the power of using your network and resources- and full-time travelers master this skill very quickly.

CF Travelers

Bob and Holly were excited to take their family on the road, but also wanted a greater good to come out of it. Holly acknowledges that there is a lot of fear in the world, and even more among the CF community. There is a common misconception that children with CF shouldn’t take risks, since their health can so quickly decline. They wanted to show Maggie Faye that she is still capable of living a big, full life while keeping up with her demanding medical treatments.

The family became the CF Travelers, and are sharing their experience on social media- Instagram, Facebook, YouTube links below. They educate others and advocate for the CF community in a unique and fun way! Ellie continues to sell lemonade for the cause, and 100% of the $2000+ she has raised was donated to CF research. It may come as no surprise that Holly was recently awarded Advocate of the Year by South Carolina’s CF Foundation.

 

Another piece of advocacy Holly and Bob are passionate about is the cost of treating CF. When Bob was employed, their health insurance covered the cost of Maggie Faye’s medications, appointments, and equipment. Estimated costs: Pulazine- $3,000/month, Orkambi- $300,000/year, vest equipment- $13,000, enzymes- $1,500/month. And remember, Maggie Faye is considered extremely healthy for a CF child- many others require feeding tubes, oxygen tanks, regular hospital stays, etc. So you can see why a job loss caused a lot of stress for the family.

Although Holly found a workamping job and became my co-worker at Sky Valley Resort in November 2017, they needed to be on Medicaid to ensure Maggie Faye got her medical needs covered. The Compass Group at the National CF Foundation helps families navigate legal and financial issues related to CF care. They were instrumental in helping the family get approved for Medicaid, a process that took several months. Although Holly and Bob look forward to having jobs that provide health insurance again in the future, they recognize that their personal experience and struggle to cover the cost of CF medications when they were “down and out” will help them advocate for other families enduring similar hardships.

What’s Next

Bob, Holly, and the girls will be departing southern California in April, and plan to go where ever the wind takes them. Bob recently found a job working remotely, so they’ll financially be able to travel more and connect with the national CF community. They have no end-date in mind, but will go where they can be of assistance to others. The road is wide open!

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A special cubby was created to house Maggie Faye’s equipment in the RV

Bob and Holly hope their girls live long, full lives. They want to instill a sense that anything is possible, failure is not fatal, and that when they focus on serving others, they will always be taken care of.

Ellie’s spunky personality add to the family’s enthusiasm for life, and she looks forward to attending the CF Advocacy Day for siblings in Washington DC once she turns 13.

Maggie Faye is interested in music and fashion these days. She is in charge of taking her medications and scheduling time for her breathing treatments- an intentional move by her parents to empower her, as many teens with CF resist treatments forced on them, resulting in declined health.
She will not, however, be attending Advocacy Day in DC. In fact, no one with CF will be there. As a rule of thumb, people with CF can never be in the same room with each other. There is no support group or meetings, and at any events relating to CF, only one person with CF is allowed to attend. This intentional isolation helps prevent cross-contamination since a typical infection that healthy people can fight off easily can result in serious consequences for people with CF. In fact, it is taken so seriously that when the family wanted to thank their advocate at Compass Group for all of his help, they had to visit the office on a day he was not there, since he also has CF. Thank goodness we’re in the age of the internet, and people with CF are able to connect, share their experiences, and support each other virtually. Also, this piece of magic:

 

 

Huge ‘Thank You’ to Bob, Holly, and their girls for chatting with me and letting me share their story. All photos are their property and published with their permission.

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Please take a moment to check out their social media, and follow their story. If you feel as inspired by this family as I am, consider making a donation in Maggie Faye’s name to the CF Foundation:

Donate in Maggie Faye’s Honor to the Cystic Fibrosis Foundation

CF Travelers on Facebook

CF Travelers on Instagram

CF Travelers on YouTube

More about Holly and her Labyrinth work

 

Author: mandi

Just a girl chasing after some adventure.

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