Nothing shatters you like receiving a devastating medical diagnosis for your child. Our family began walking this journey at my 19-week ultrasound. We’d gone into the procedure excited to learn the sex of our baby, but as the appointment progressed, we learned we were in for much more than we bargained for.

We were joined by a specialist from Royal Oak Beaumont who informed us that our baby, Jenna, was presenting with something called an echogenic bowel, which could mean either absolutely nothing or cystic fibrosis. 

Headshot of a woman seated in a car
Julie McCaffery is a resident of Romeo, Michigan. She has been married to her husband, Curtis, for 17 years and is mom to four daughters. She is a volunteer with Bonnell Foundation. (Courtesy photo)

It was terrifying. We met with a genetic counselor, learned all we could about cystic fibrosis, and we prepared — but we only loved our little girl more.

A few months later, Jenna Faye was born, and yes, Jenna has CF.

We’ve spent the last 20 years on a roller-coaster navigating her disease, her treatment, her health insurance and the financial impact a diagnosis like this has on a family. 

Families like ours understand devastating financial consequences, too. As we enter a new year, though, there are opportunities for everyone to help – including our local officials and policymakers in Lansing.

There are chances to protect access to lifesaving prescription medicines, especially when organizations offer copay assistance. Last session there was legislation to help. We need it again. There are even opportunities to minimize the impact medical debt has on families. Bridge Michigan has done some incredible reporting on the topic.

It would all be welcome.

You would think that navigating a deadly disease is as simple as getting a prescription from the doctor, ordering the medicine she needs, and taking them. No. Insurance companies never let it happen that easily. Prior authorization requirements for medicines Jenna has taken — effectively — for years. Decisions from strangers in office buildings who believe they better understand treatment needs than world-class pulmonologists. Then the out-of-pocket costs.

Treatments for this disease have come so far, and as a parent, I’m so thankful. We’re planning a future, not a funeral. The harsh reality though, is these incredible treatments come at a cost. No one wants to be forced to choose between lifesaving treatment, keeping a roof over your family’s head or keeping them fed, but for many that is the case.

To say this is all very overwhelming would be an understatement.

In her early childhood, Jenna was very frequently admitted to the hospital. Between 1st and 2nd grade, she was admitted eight times in 14 months, staying 1-2 weeks each time. She’s celebrated almost every holiday and even her 17th birthday in the hospital.

With so many hospital stays, medications, treatments and clinic visits every three months (when healthy, more frequent if there’s something going on), one starts to see that CF can take its toll on the patient, their caregivers, siblings, their bank account and their mental health.

There’ve been times where I’ve been in the hospital with Jenna for two weeks while my husband is at home with our other children, we’re running low on groceries, wondering how we are going to pay the rent, hoping we have enough gas to make the drive home.

Some days I question God and ask why? Why so much on one kid, one family? I don’t know that I’ll get that answer, but I have an idea. 

I’m loud. I’m an advocate. I’m very proud of my daughter and how she’s overcome so much already in her life. She’s got cystic fibrosis but CF doesn’t have her. She’s also got me, and I’m going to do everything I can to make sure she — and patients like her across the state — have the best access to the best care and aren’t ruined financially while they fight to stay alive.

I hope our state representatives and state senators will help me.

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