A Trisomy 18 Angel

Dane Thor Sogge is our Trisomy 18 warrior who lived his life to the fullest. He has a smile that will light the room and would change people’s day. He loved being around others and exploring the world. Despite all of his medical issues he loved traveling and especially loved going to see his Vegas Golden Knights play hockey.

We found out Dane was going to be special at our 20 week ultrasound when we found out he had heart and orthopedic issues. It was suspected that he had Trisomy 18 which was confirmed after he was born at 38 weeks. He was 4lbs 10oz when he was born and had a short 10 day NICU stay. He did require rectal surgery while he was in the NICU and came home to us with oxygen and a nasal feeding tube. After he was born he was found to have a moderate VSD, an imperforate anus, club hands and a club foot. Dane never had surgery for his VSD due to developing pulmonary hypertension but we treated his heart conditions aggressively as well as him foot and hand deformities.

He had his first outing to pick up his brother and sister from school the day he came home from the NICU. At 8 weeks he traveled from Las Vegas to San Diego and had his first trip to Legoland and the beach. The kids even buried his feet in the sand. Then at 12 weeks he had his first trip to Disneyland! This was just the start of his adventures by the time of his passing at 4.5 yrs old he had been to Disneyland and WDW several times each, Hawaii, Grand Canyon, many beaches, and visited 8 different states.

He loved being out with his family. He attended his brother and sister’s school events. He watched them at Karate and achieved their 2nd degree black belts. He also liked going to the barn and riding on his sister’s pony. He loved going to Golden Knight Hockey games and was going to join the sled hockey team when he was big enough. By the time of his passing he was able to sit on his own, hold items, communicate on a speech device and walk short distances in his gate trainer. He truly lived up to his name… The Mighty Dane Thor! 

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