One Mom’s Story
Almost 10 years ago our 2nd child, Caroline, was born. She came early… She had a few breathing problems right when she was born, but nothing that required a longer stay than a few nights in the NICU.
She was getting ready to be discharged when they did one last physical exam and could feel her kidneys :(. They sent her for an ultra sound. A few hours later, a neonatologist came and handed us a packet of information from a physician-only website detailing what ARPKD/CHF was. He said, “We think your daughter has this” and handed us the packet of info.
During that time, all was a blur… we read the first few lines of the packet and words like mortality rates, and death stuck out. He didn’t know anything about this disease so couldn’t give us any other information than the outdated information in the packet. It stated our daughters chance at survival was less than 30%. But seriously, how could that be. She was sitting in her carseat, next to us, waiting to the leave the hospital! They were going to send a dying baby home with us, but she looked “fine”.
Stunned, devastated, shocked.. we went home. Brought her home to her 17 month old big brother who was so excited. Kevin began researching everything he could about the disease. I, of course, was in denial. Eventually we found support through the Alliance group and other families who had kids with the same disease.. Kids who were LIVING with this disease.
Our family and friends began to ask what they could do. How could they help! We didn’t need anything, and our insurance covered any appointments/meds that we needed for her to be stable. So sitting around one day, we decided to plan a golf outing. Most of our friends and family love to golf, so we thought it would be a great way to help them get involved. Feel like they were doing something!
We want to do more. We want to raise awareness, we want to support families, we want to do more for our kids!
This year we hosted our 8th golf outing! It was incredible. It is an extremely draining and emotional event for about 2 weeks for me. I love what we do, but I hate the reason we have to do it. But my two affected kids need more. We need to do more. The last few years, we also have added a euchre tournament around rare disease day as well!
I LOVE hosting these event and would LOVE to answer any questions or even help someone in this group set up an event. Please reach out. If you have family/friends that want to get involved, know that there are ways to do it! We can work together to compile fundraising efforts into life changing studies, or research! Please consider thinking about this and impact we could have if we all work together!!
Elizabeth Pruzinsky
