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Parents honor, support families affected by rare illnesses

Kip and Angie Dominy didn’t plan on having a third child, but when they found out they were having a boy, they knew what his name would be.

They looked at each other and said, “Hogan.”

It’s an old Irish name, meaning “Young Warrior.”

As the months passed, the Athens couple learned just how much of a warrior Hogan was. During the same doctor’s visit where they learned they were having a son, the Dominys also learned he had a genetic problem, most likely Down syndrome.

Three days later, test results showed a defect much more rare – and much worse. Hogan had Trisomy 18, an incurable genetic disorder that affects one in 8,000 babies. Most never make it to birth. Those who do often don’t live past a week.

The Dominys could’ve ended the pregnancy, but they decided to move forward with one goal in mind.

“It was touch-and-go the whole way,” Angie Dominy said. “But we prayed from Day 1 that we’d get a chance to meet him and say hello – and goodbye.”

Planning for a birth and a death is hard to explain, the couple said, but Kip Dominy had to try. He started up a blog,, and chronicled his family’s story. Soon, readers across the world were hanging on every post.

Hogan was born on Good Friday last year at St. Mary’s. He weighed just 3 pounds and 3 ounces. That evening, Kip Dominy wrote his son a letter on the blog.

“I am so thankful that I got to spend today with you,” he wrote. “I am so happy that you got to meet friends and family while you were taken to your suite in the NICU! You have so many friends and family that weren’t here that were praying their hearts out for you. They are continuing to pray Hogan! So many people love you, I know you can’t comprehend it right now because I can’t either. Your mom and I are overwhelmed with the love, prayers and encouragement.”

Every night, Angie and Kip Dominy held their son, reading the comments they were getting.

Hogan left them 16 days after he arrived. But he touched more people in those 16 days than many touch in a full lifetime, Kip Dominy said.

“The hardest part – you want to be able to tell your son that you’re proud of him,” he said. “We know he knows. We know he fulfilled a purpose through God’s will.

“We feel so honored that God chose us to be his parents.”

Now, the parents are moving forward with a new initiative that will make sure Hogan’s legacy is always remembered. This summer, they will launch, a website dedicated to men and women who also are affected by rare diseases and conditions.

“We were the one in 8,000,” Kip Dominy said. “Unless you’re the one out of 5,000 or 10,000 or 100,000 – unless you’re the one, it’s different.

“The one thing everyone needs to remember is that they are not alone.”

The Dominys and a board of different health professionals around Athens hope to create a site geared toward “the ones,” a place where they can share their stories and lean on each other for inspiration.

The specific environment should give them an opportunity to be more open about their specific conditions with people who have that special understanding, Kip Dominy said.

“We told the story of our journey, and looking at it now, it was therapy,” he said. “But it helped other people, too. Hogan’s story touched people all over the world.”

The Remember the One board will hold a fundraiser at 3 p.m. May 15 at Showtime Bowl, 555 Macon Highway.

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Tagged: trisomy 18, downs syndrome