— Written by Jennifer Pontz Miller
In honor of Mother’s Day, I would like to share my story as my life as a mom of kids with medical needs….
Hello! I am a mom to two energetic boys, Jackson (almost 6) and Jacob (3 ½). Like many moms, I work a full time job while taking care of my kids. But my boys are unlike other children – they have Cystic Fibrosis. CF is a life shortening genetic disease that affects the lungs and digestive system – and there is NO CURE!
Their diagnosis came as a surprise to my husband and I. CF is genetic but we had no family history. My reaction was not typical of most parents being told that their child has an illness with a life expectancy less than the age I was at the time. I was instantly focused on my older child – assuming if my baby had CF, then so did his older brother.
The next day, we met with our CF Care team at Penn State Hershey Medical Center. They told us about the medications we needed to start immediately and showed us how to do manual chest percussion therapy. Our social worker walked us through applying for Medical Assistance. I told them we had another son with many of the digestive symptoms of Cystic Fibrosis. In the following weeks, we visited HMC multiple times and Jackson was also diagnosed with Cystic Fibrosis. Call it mother’s intuition, but I knew since the day I learned about CF in the pediatricians’ office, both my boys had it.
Our family quickly adapted to a new life of medications and treatments. CF is sometimes called an invisible illness because those who have it look “normal” on the outside. The boys are pancreatic insufficient and have to take enzymes with every meal to help absorb fat and vitamins in their food. Every day the boys receive 60 minutes of respiratory treatments. This consists of inhalers, nebulized medication, and chest percussion therapy. The treatments increase when they are sick or culture a bad bacteria. And we have to be very careful around people with any sort of illness. The common cold might get you down for a few days, but could land the boys in the hospital.
I have had to advocate for my children since day one. I spend countless hours on the phone with insurance, pharmacies, and doctors. I have had to fight for weeks to get medications they desperately needed. I have challenged insurance for needed therapies, appealing the whole way up to the Department of Health – and won both times! In the hospital, I rarely leave the boys’ sides and am the mama bear residents do not want to mess with.
A few months after the boys’ diagnoses, we learned about the Cystic Fibrosis Foundation and Great Strides – a walk for Cystic Fibrosis. I now had a purpose and felt like we were making a difference by raising funds and awareness to find a cure. With over 30,000 people living with Cystic Fibrosis in the U.S., it is still considered a rare disease and the CFF receives no federal funding for research, so every dollar counts. Since 2013, the J Team has raised over $75,000!
Through it all, I believe that we are never given more than we can handle. Having children with medical needs was never in our plans but we will do whatever is needed to give them the best life possible. Someone I love needs a cure and I will not stop until we get one.
Please take a moment to visualize our journey in this video: