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Haven't You Heard?

A Rare Disease

Enjoy each day.

Haven't you heard? I doubt you have. Most haven't. It’s such a rare disease that only one out of five thousand babies are born with this congenital disease.

My brother? He’s one of them. John had surgery to correct the issue when he was a baby. They missed something, though.

Let’s go over what exactly is Hirschsprung’s. The way your intestines work is that there are nerves that help move things along. Someone with Hirschsprung’s have missing nerves. The only current fix to that is to take out the part of the intestines that have the missing nerves.

As a baby, John had the necessary surgeries that removed those parts. Or so we thought. We were told, or rather my parents were told, that there would always be excessive gas and he would need more fiber in his diet to compensate for the missing part of his colon. So we all knew he would always be different and do things differently.

We just didn’t realize all of the complications he had throughout his 31 years were because they missed a small section of intestines that had no nerves.

He almost died.

The fact that he was almost always constipated stretched out his intestines. They became thin, getting holes. So his bowels leaked out. He became septic. Without getting too much into it, septic is a huge infection. He was dying. With the stress his body was under, while he was under surgery to fix his intestines, he had two strokes.


We were devastated. Not only because of the strokes. The doctor said he had been sick with septic for a long time. We never knew. How could we not know?

He was hospitalized for five months. Five months. He’s home now and thriving. He has two colostomy bags and will soon have one bag. The goal is to be put completely back together. His left leg has suffered the most, you can tell from the way he picks it up that he had strokes.

Even that is better. He picks it up better and his foot isn’t as curved as it once was. He still has neural returns, but they are farther between.

He lost so much weight because he wasn’t eating when this all started in January. He gained it all back. He’s eating again and seems to be back to his normal self, for better or worse.

We had one scare. He developed an abscess and it ruptured and a small part of his scar came open to release the abcess. He was so scared, there was a hole in him. The abscess was most likely caused from his surgeries.

All of this wasn't even all of the worst of it. When he first went into the county hospital, they had no idea what we were talking about when we said he had Hirschsprung’s. They had to Google it. Google it. This disease is that rare.

If this article does anything, my hopes is that it will get this disease out there. Then more people will know about it, more studies can get done, less people would have to Google it.

Please, tell your friends and family about this disease. Imagine if you told two people about it, and they each told two people, and those people each told two more, etc. This disease will no longer be limited to a Wikipedia page. People will know this disease. Support groups could go up, chat rooms so those who have it or care for those who do have help. The one thing we lacked as he grew was support. No one knew about the disease, so how were we to know if we were doing something wrong?

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