Two Mito Warriors Need Your Help!
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
Let's start with Colin. He is having more trouble with walking and getting around in general. We are not completely sure what all is going on, but we are working with the doctors to try and figure it out. He seems to have lost muscle in his abdominal and hip areas causing more weakness. He also has core instability meaning his core is getting weaker. He is working hard in therapy three days a week to try and slow this down.
Jesse is growing well on a combination of formula and TPN with lipids. He scared us all during the summer, but he seems to be turning a better corner right now. We are hoping that he can come off of the lipids soon so that his liver is not having to work so hard. He is also in therapy three days a week, and seems to be doing well with the tasks that they have him working on.
We have decided, after talking to some other Mito families, that it is time to start looking into service dogs for the boys. Each boy would need their own as they do not have one dog work with two people. We are looking at a few different options, but all are very pricey. We have a lot of changes happening this year, and the boys will need the extra support and comfort. These amazing service dogs will provide the boys with a much better quality of life, and we are doing all we can to try and provide that for them. Please consider helping us raise some of the funds we will need in order to get the boys what they need.
On another note, we did stop all nursing care about a month and a half ago. It has been a big change, but one for the better with our boys. Their behaviors are much better, and they are taking pride in helping with some of the medical needs they have. The boys have grown a lot both physically and emotionally in the past few months, and we are very proud of them!
Now that things have settled down with Jesse and the hospital is not currently our second home, we will work on updating a little more often. We hope that this holiday season has and will continue to be a great one for all of you. Thank you for the continued support!
The Kopack Family
Both Jesse and Colin have had a lot of anger and sadness we are trying to work through right now. Grief has hit our family hard right now... and we are just trying to keep our heads above water at the moment. I am hoping that we can get Jesse feeling better and more stable, and that we can get Colin to be happy go lucky again sometime in the near future... but in the mean time please keep the boys in your thoughts.
As for Colin medically... he is doing okay with his feeds, but his legs are giving him more and more trouble. He is getting very frustrated that he cannot run around as much as he use to without paying for it later. We are working on setting up in home therapy, and are happy that our new house is almost done so the boys will have their own therapy clinic in the basement. We are hoping this helps them stay stronger for longer.
Jesse has a sleep study coming up this week. I will post an update once we get the results from that. Thank you for the continued support and prayers.
Things have been very tough for Jesse these past few days... not to mention the past 2 months. He has been having a lot of gut pain, bleeding from his GJ stoma, bad nausea, and just plain uncomfortable. He is begging me through the screams to make it stop and it is crushing every part of my heart as I hold him tight and cannot do anything to fix the pain. Today was far worse because he was set to try going from 24 hours a day on TPN to 21 hours, but he did not tolerate being off the TPN and his sugars dropped quickly. He ended up having a very hard time recovering from this and was in major pain tonight. He fell asleep around 1 am, and has been crying out in his sleep all night. I am very nervous for my little boy and not sure how to help him (or his brother who is very scared for him). How can I help them cope when I cannot even find a way to cope right now?! Please keep them both in your thoughts right now... things are very tough at the moment. We are in Memphis to see their GI and a few other appointments. We are staying with friends to help lighten the boys load a little. As their mom... I have been an emotional wreck this past month, and just need to find a way to cope so that I can help them cope. This disease is trying hard to kick our butt right now... but we will keep fighting! It is killing me to sit here and listen to my baby crying in his sleep. Please send all the thoughts and prayers you can. Colin is being effected greatly by all of this and I am having trouble finding ways to help him through it as I struggle to get through it all too. Mito is so hard... just not fair at all. I want to be worrying about which baseball team to pick, what school is best for them, what to pack for their lunch, anything but Mito... IV food for my son... guts shutting down... pain upon pain... what this scary future holds for my boys... I just want my babies to feel okay. This journey is so much harder than I could ever begin to describe. I am writing through the tears right now and just don't know what to do anymore to keep my babies comfortable. It is killing me inside and I am just plain angry/sad. Mitochondrial Disease SUCKS.
My son went to school with these boys dad. This story is legit. Thier struggle is real. Please help them.
We have a lift & ramp that can attach to a car or truck! It can lift a very heavy chair! We would love for you to have!
We are praying for your family.