Hi, my name is Tara Pasholk. My husband, Mike, and I are very blessed to have two beautiful sons in our lives. We have a eaight year old and a five year old.

Five years ago, our lives changed drastically with the birth of our second son. The incredibly beautiful and happy event was also immediately scary and stressful because my tiny baby came into the world shaking horribly. The doctors immediately questioned me if I had done drugs or drank during pregnancy, which I was devastated by because I am the type of mother that won’t even have a cup of coffee when pregnant. Within weeks, he began screaming non-stop and our lives were turned upside down. It was then we began seeing doctors, in search for answers to what was wrong with our tiny baby. He continued to scream and you could tell he was in severe pain. He would never sleep more than 20 minutes at a time and when it came time for him to begin eating food, he refused or if he would rarely put anything in his mouth, he would scream worse and the food would come out whole and completely undigested. The day I saw a cooked spaghetti noodle come out completely perfect, his doctor and we knew things were much more serious than we had thought.

Besides the fact that my baby refused food because he couldn’t digest it, we have figured out he has Enteritis, an ulcerative inflammation of the small bowel, leaky gut syndrome, ulcerative colitis, ulcerative esophagitis, bilateral kidney reflux with urinary track infections, issues with yeast, bacteria and heavy metals, SIBO, issues with histamines which have caused severe hives, radically high neurotransmitter levels and many more things. We have found all these pieces to the puzzle but we are not able to put the puzzle together and figure out exactly what is going on or how to fix it. Kohin did not sleep for the first 3 ½ years of his life which caused health issues with himself and also me, his mother.

We traveled all over searching for doctors including Chicago, Madison and Milwaukee and they had no answers for us. We are currently seeing a specialist in Texas, which the insurance does not cover. The testing we need to do every other year is approximately $12,000 and including travel and other pretesting and travel coverage the trip costs anywhere between $15,000-$20,000. We need to go see him once a year in Texas and do phone consults consistently during the year, so the cost is very large. We also have regular medical bills here for him so our average yearly out of pocket costs are between $30-$35,000. Our parents have helped us with what they can but we are struggling severely with finances. I called everyone I could think of and always got turned down for any kind of assistance. We feel like we are plummeting over a ledge but will never stop with our search to try to find an answer for our little guy.

Kohin should have been tube fed, but couldn’t because he reacted to everything that could have been used in the feed. He was failing to thrive before we saw the Texas specialist. He was able to get him to eat using steroids but now has been on an array of medicines, including a chemotherapy drug, and kept either reacting to them or he would become resistant to them. After a two year medicine roller coaster, we decided to try diet and other approaches to see if we could get his system more stable. We will now find out if our efforts are helping or not when the testing is done and we will conclude what the next step is. If meds are needed again (which the doctor assumes will be), we need to find something that will work with his system, but Kohin reacts terribly to almost everything we have tried, so we need to just continue our search.

When people ask me "How are you doing?," I simply say "We take one day at a time..."

For us, this means so many things...

One day to research more and try to find answers...

One day to hope and pray our little boy will eat that day...

One day to find something that will help him...

One day to pray his little system doesn't fail and he can continue to survive...

One day to continue our search to help our little boy...

Our day to day struggle is huge and financial struggles are also daily. We are not able to make the trip to Texas without help as we cannot even cover the day to day costs for him. He is only able to tolerate six foods, but those six foods are very expensive and medical is difficult also. There are many things that his doctors have recommended we have for Kohin but we are not able to cover the costs for these things either. I really hope that you are able to help us on our journey in helping our little guy continue on his medical journey.

Sincerely,

Mike & Tara Pasholk
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