Jonna was diagnosed in 2015 with gastroparesis, a digestive disorder that is literally translated to "stomach paralysis." It is believed to have started with an awful virus in February of 2015 and likely due to an underlying autoimmune condition/connective tissue disease. To complicate things, she was also diagnosed in October of 2016 with SMA (Superior Mesenteric Artery) Syndrome and CIPO (chronic intestinal pseudo obstruction), both causing blockages in her intestines, which has since left her unable to eat or drink anything at all. We started our journey with feeding tubes in September of 2015, after she lost 20 pounds in 5 short weeks, but with complications along the way, Jonna has now been TPN (total parenteral nutrition) dependent since October of 2016 to get the nutrition she needs to survive. She now has a g tube stoma (which drains everything out of her stomach 24 hrs/day into a bag), a j tube (which allows for slow formula feeding into her intestines 24 hrs/day) and a double port into her heart where she receives TPN 14 hrs/day. This requires weekly blood draws and port access changes, nursing and doctor visits, infusions, and hospital visits regularly. The TPN has been crucial to her thriving, however it has caused some major issues to her other organs, and will continue to do so if we can not get her off of it soon! She has had major complications with her liver as well as an emergency gallbladder removal just a few months ago. We HAVE to get her off of TPN and get her stomach working again!!!
Our local team at K Hovnanian Children's Hospital has been wonderful, but we coordinate care with the top motility doctors in the country at Nationwide Children's Hospital in Columbus, Ohio. After several unsuccessful attempts, Jonna is now finally a candidate to receive the gastric pacemaker in a two part surgery scheduled for October 17th and October 31st. This will not be a complete fix for her, but we are hopeful that it will be the jumpstart we need to get her stomach to begin working again. At this point, Jonna is unable to take any medications by mouth or through her g feeding tube, so the hope is that the pacemaker will at the very least allow us to get her the motility medications she needs to help the rest of her system start working better. Then, slowly but surely, WE WILL GET OUR DAUGHTER TO BE ABLE TO EAT AGAIN!!!
This trip is terrifying in so many ways. Our family will have to be separated for weeks at a time, with Jon and Allie (dad and sister) staying here in NJ so that Jon can continue to work at the fire department and Allie can continue with her first year in high school, while Jonna and I (Mom/Tara) are out in Ohio for an undetermined amount of time. We are hoping to be home for Thanksgiving, but will then need to take several more trips out to Nationwide, depending on her progress. There are only three surgeons in the entire world who perform this surgery on children under 16 years old, and at last check, there are less than 100 kids who have this gastric pacemaker, all with different circumstances. We are not able to have anyone locally troubleshoot the pacemaker, so if there is any sort of problem, back to Ohio we will go. We will take things day by day as we continue this fight, but it can truly be overwhelming at times. Many of you know that Allie has her own set of health issues...the fears I have about not being able to be here to care for her during this time is heartbreaking, but we will have to divide and conquer. We will somehow just have to make it work!!
The emotional toll has been incredibly difficult but the added financial pressures have been tough as well. Unfortunately, I have not been able to work since October of 2015. With Jonna hospitalized for weeks at a time, and requiring daily care, along with our traveling back and forth to Ohio 5 times this past year and more to come, I don't know when I will be able to return...and although we are blessed to have insurance, the copays and out of pocket expenses cost hundreds of dollars per week on a regular basis. Jon is a wonderful provider for our family, and continues to work hard taking all of the overtime he can get, but with us being away for the next few months, he will need to be home for Allie and taking care of our home, adding to the financial stresses.
I share all of this with you so that you can have an understanding of what our family and our little chick is going through. Jonna is an incredible 13 year old girl who has been through hell these past few years. She is Fighting HARD every single day to keep that smile on her face and to do all of the things that a "normal" teenager can do. She has been forced to give up so many of her favorite things (soccer and cooking, specifically) but she is managing to go to school when she can, and trying to make the best of every single minute! We try to keep positive and we don't always share the challenges that come along with having a child with a rare disease or chronic illness. This is harder than you could ever imagine.
So with all of that said, anything you can contribute would be extremely appreciated. We struggled to set up this page as we know so many of you have been generously donating to our Fighting HARD Foundation where we help other families who are going through similar journeys. We would much rather be helping others than having to ask others for help, but we honestly just can't do it alone! We need help with medical expenses, medical supplies, and traveling expenses for our family as we get through these next few months. We are so humbled and grateful for all of the support. Thank you for reading about our journey with Jonna and helping our family!
- Tracy Eckert Nagy
- Christine Hahn
- Jaclyn Lang
- Debra Suchan
- Caryn Zieve
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