We want to introduce you all to our two sweet boys Colin (age 6) and Jesse (age 3). They both happen to have an often terminal illness called Mitochondrial Disease. Mito can affect people in many different ways. In our boys’ cases, it affects their muscles, gastrointestinal tracts, lungs, brains, eyes, ears, and nervous system. They have autonomic instability which causes them to have bad heat intolerance. Their stomachs have failed and intestines are not far behind. Our youngest has had to have a permanent IV placed for nutrition at this point. It is very difficult for us to watch them struggle on a daily basis, but we are blessed that they are as happy and care free as they are despite all of these major health issues.
We are in desperate need of your help! Our family has had and is still experiencing many struggles. Our kids have been the biggest blessings in our lives and continue to amaze us with how smart and happy-go-lucky they are. It took us years to find a diagnosis for the many medical issues that our boys face. After 4 1/2 years of searching, we ended on the diagnosis of Mitochondrial Disease with Complex 1 deficiency. Their bodies are slowly giving up on them, and we are doing everything in our power to keep them as healthy and happy as possible. Both boys are J-tube fed with enteral formula 23 hours a day, G-tube vented 23 hours a day, and Jesse has a central line IV for TPN to be administered 12 hours a day. They are single hand-idly the two most awesome kids a parent could hope for. Unfortunately, due to the 6 years of medical intervention, we have reached our financial brink and will be forced to file bankruptcy unless we can get the financial help we so desperately need.
The photo below shows just one day worth of supplies that we go through in order to keep our boys alive and nourished. Their medication schedule is 1am, 6am, 9am, 1pm, 3pm, 6pm, 8pm, and 10pm. In this time frame they get 6 to 8 different medications, most of which are taken 2 to 3 times a day. They use a cough assist machine 2 to 3 times a day because their lungs are not strong enough to clear the typical buildup of mucus that coats the lungs. We have to prep their enteral formula daily with blenders so that they are able to get 23 hour drips into their intestines to keep them nourished. Jesse is also on TPN (also prepped daily) through a central line (permanent IV in the chest) and gets 80% of his nutrition through his heart. Their weak immune systems cause us to often be home bound, and we have to continually Lysol and sanitize much of the house in order to protect them. When we do go out they never leave without their masks and a hefty amount of hand sanitizer, not to mention all of their pumps and supplies. We have a few days a week where we have nurses helping us, but for the most part, it is just Mom and Dad.
Each week brings 2 to 3 days a week of driving to LeBonheur Children's Hospital for therapy or doctors’ appointments. The boys have weak muscles, and use adaptive medical strollers when we are not in our house. Colin is now in a power wheelchair and we still need to find a way to buy a ramp that can load and unload the over 200 pound chair. Due to Mitochondrial Disease we have had to get a much larger vehicle than we originally had for our family, so that we could get them from point A to point B with all of their medically necessary equipment. This has brought on another much unexpected bill that just piles on top of all the medical debt we have accumulated.
Many of the things most families take for granted, our family struggles with multiple times on a daily basis. For example, eating food for breakfast, lunch, or dinner is nearly impossible for us. The food smells cause the boys to get very nauseated and drastically slows their gut motility making it near impossible for them to tolerate their J-tube feeds. As a result, Sarah and I have to eat in our garage (100+ degrees in the Memphis summer can really take its toll on you quickly, as can 20 degrees in the winter). We have our garage set up with a kitchen table, microwave, toaster over, and blender. By eating in the garage we have had to give up on the typical idea of cooking, and often have to resort to using our microwave and toaster oven to cook or resort to fast food. This can get expensive quickly, and greatly limits our options as far as our diet is concerned. That being said, we will do whatever it takes to keep the boys bodies as healthy as possible.
We thank you for taking the time to read this and hope that you will help. We are in dire need of assistance and without your support, risk losing our home and more. If you would like to learn more about the journey we have been on, you can visit our website at http://www.kopacko.com
where we try and update monthly.
Jason and Sarah Kopacko