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Hogan1My beautiful wife Jackie, and I have three boys: Desmond, 8-years-old, Liam, 5-years-old and Patrick, 3-years-old. Patrick has聽severe hemophilia A, and inhibitors. We live in middle Georgia.

Until three years ago we聽knew nothing about hemophilia. We had no family history and it was the furthest thing from our minds as parents. We have two聽strong, energetic,聽healthy boys and we聽thought we had a pretty good hold on this thing called parenthood. That all changed with Patrick. His diagnosis threw us into a whirlwind of聽challenges, questions, and a new life of struggles聽and聽fears. But we also life goals as a family.

I often joke that if something is going to happen, it鈥檚 going to happen to us. Only three years into this life with hemophilia, we have had at least a dozen ER visits, x-rays, CT scans, stitches in the forehead, hematomas the size of golf balls, black eyes from head injuries鈥he list goes on. It鈥檚 easy to fall into the trap of, 鈥淟et鈥檚 live in a bubble, and avoid anything remotely dangerous,鈥 but that鈥檚 not how our family is meant to live. Hemophilia or not, we are meant to explore and love all that life has to offer around us.

Recently we had the amazing opportunity to attend the聽HFA聽Symposium聽in Las Vegas.聽We planned to arrive a day early to make a detour to the Grand Canyon. It made聽sense to attempt this, but at the same time, we also wondered, were聽we crazy? We were looking at three kids ages eight and under, a聽four-hour聽plane ride, then a聽four-hour car聽drive, with one聽of the children聽having a medical condition that requires聽so much preparation beforehand. What if something went wrong? Would聽we聽be hours away from anywhere that can help? These were all questions of fear, and fear leads to nothing good.

The travel details are a story all on their own, but we arrived at our hotel safely late that evening聽after sixteen hours of travelling.聽All that was left of our adventure was to get everyone in bed, and then get聽up early to see the sunrise at the Grand Canyon. We just had to get up in time to do an聽infusion聽first.

Remember when I said if something is going to happen, it鈥檚 going to happen to us? Our morning infusion gave us a bit of a聽scare;聽I could not get聽Patrick鈥檚聽port line to flush or get a聽return. We had this problem a year earlier and had to have聽Patrick鈥檚聽port replaced after only聽nine聽months. On the morning of our Grand Canyon trip it felt as though it was doing the same thing again. We made a mental聽effort not to panic, trying not to worry about how far away we are from help or hospitals. After about twenty minutes聽of praying and moving Patrick鈥檚 arms up and around, the port started flowing again.聽We missed our sunrise time, but we did not let that stop us聽from enjoying the rest of our day.

There was聽a moment聽during聽our聽short time in the Grand Canyon State Park that will stick with me forever. A tour guide recommended taking a small hike down into the canyon.聽I was nervous about聽it because of how narrow it gets聽at times and聽about the聽uneven footing. I worried about Patrick twisting an ankle or falling on a knee. That would have led to many聽hemophilia complications in聽such聽a remote area. I wanted to carry him the entire way but he kept telling me,聽鈥淣o, I can do it.鈥

Hogan3Even at three-years-old he is conquering mountains I never could have and he pushes my wife and I to conquer new ones. He reminds me every day to not live in fear of hard or scary things, but to face them head on. The reward for our hike into the canyon was finding beautiful paintings on a canyon wall of wild animals being hunted by Native Americans.

Our day was such an amazing life moment for us聽as a family. Yes, hemophilia is scary, even more so as a parent of a young child who is at an age of curiosity and adventure. However, hemophilia is not something that I want to hold our family back from missing out on life鈥檚 great rewards and adventures.聽I want that sense of curiosity and adventure to always grow and flourish.

Greg Hogan, and his wife, Jackie, lives with their three sons in Georgia.





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