Two Mito Warriors Need Your Help!

(Updated May 2023) Below is our story as the boys were young, now Colin is almost 15, and Jesse is 12. So very much has happened over the past 9 years. These past few years have been full of ups and downs. The boys now have a little sister, Piper, who has helped us have so many bright lights in some dark times. Jesse has survived DIC (blood hyper clotting and thinning at the same time, often leads to death) 4 times in 2020 alone, not to mention many other trials and tribulations from central line failures to getting an apedicostomy, and having to deal with some major muscle pain and fatigue. Colinnow has a central line like his little brother and lives on TPN as well. He has had a horrific time with gut pain (ulcers) in late 2022- early 2023 which ended up with his J tube button pushing out of his stoma and causing a gaping wound which took months to heal. The boys some how have all this going on, and in the midst of it are the most amazing young men. They are kind, compassionate, brilliant minds who, you would think would be resentful or mad at this point, yet they surprise me daily with their out look on life. They are both fully TPN dependant 17 hours a day at this point. We use their G and J tubes for medication and venting only. Their central lines are what keep them going, and I am beyond grateful for science that this is an option. Life has been a struggle at times, but we have tried to make the best of it. These boys have touched so many peoples lives in their time here with us. They will keep fighting, and I will be right by their side doing the same! Their sweet sister is their number one cheerleader, and I cannot express enough how much love I have for these sweet babies of mine. We now live in the Nashville area and travel to Alabama, Atlanta, and also have doctor's here in Tennessee who help keep the boys stable. We also haveana amazing team of home nurses that help us get through our days. Thank you for taking the time to come read about my strong young men. The next sentence begins the original post from this page, and I hope that their story can encourage you to live the life you have, because you only get one!

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.

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. 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.

We thank you for taking the time to read this and hope that you will help.

Thank you,

Jason and Sarah Kopacko