Pauca Family: Raises $15,025 in Race for Victor, April 12, 2014, NC
Pauca family finds positives in fight against rare disease
Brant Wilkerson-New/Winston-Salem Journal
Posted: Tuesday, April 8, 2014 9:00 pm There will be a 5-kilometer road race Saturday at Tanglewood Park to benefit a charity unlike any other in the nation. The Race For Victor and Pitt-Hopkins Syndrome will benefit the Pitt-Hopkins Research Foundation — the only foundation dedicated to the disorder and an organization with strong ties to Winston-Salem. Theresa Pauca was instrumental in starting the foundation in 2010 after learning that her son, Victor, had the rare developmental disease. Pitt-Hopkins, the result of an abnormality in the 18th chromosome, causes physical challenges such as trouble walking and breathing. Intellectual disability is also severe, and children have difficulty communicating, and in some cases, might never be able to speak. In 2008, 2-year-old Victor was the first child in North Carolina to be a given a diagnosis of Pitt-Hopkins, his mother said. At the time, the Paucas were able to get in touch with only three other families with children that had received similar diagnoses. There wasn’t much out there at time, other than worst-case scenarios. “Just a few really scary research articles,” Theresa said. “When there was only a clinical diagnosis of it, they were looking at the most involved children.” Theresa said that her family didn’t know where to turn because there was so little known about the disease. “It was really awful, actually,” she said. “We got this diagnosis, but there were only, at that time, just a handful of people.” Hand in hand with other families affected by Pitt Hopkins, they decided to start a foundation, and together in four years have raised more than $700,000 for research. (statement revised by Pauca family) “We so wanted to do a 5-K to encourage people, even if they aren’t running, they can walk … just to encourage people to be active and appreciate what they have to be able to walk or run,” Theresa said. The biggest moment of the race won’t be when the winner crosses the finish line — it will be when Victor crosses the starting line. When his disease was diagnosed, there was doubt about whether he would ever be able to walk. Doctors said that it might happen by the time he was 10. When he was 7, Victor walked more than half a mile to start the race, and he is aiming to improve that mark this year. “We’re just really proud that he is able to do that, especially since we were told he may never walk,” Theresa said. Victor’s case of Pitt-Hopkins isn’t a worst-case scenario. Now 8, Victor has a keen awareness of what’s going on around him, to the point that the Paucas can’t mention going outside, because once Victor hears the word, he becomes determined to go out and play. “He really loves to be in nature, which is just so beautiful,” Theresa said. Although she originally looked at Pitt-Hopkins as a challenge, Theresa Pauca now prefers to look at the positives with her son. “We’ve got to get the word out to people that there is hope, and the children learn over time, and they’re wonderful human beings that are a blessing to the family,” she said. Victor has taught the Paucas to slow down and enjoy moments, Theresa said. His favorite season is fall, because of the falling leaves, which he often stops to just watch. “We all enjoy seeing that, but we don’t take it in and really think about how beautiful that is,” Theresa said. “He stops and smells the flowers — literally he does — nature, and feeling the wind on his face, and experiencing things like that are some of his favorite things.” The race shirts will feature a quote that the family has chosen to live by: “Happiness is a choice. You can be bitter, or you can be better. We chose to be better.” For more information on the race, visit www.raceforvictor.myevent.com. For more information on the Pitt-Hopkins Research Foundation, visit www.pitthopkins.org.Race update from the Pauca family:
One of my family’s favorite days of the year is our Annual Race for Victor and Pitt Hopkins Syndrome 5K. It is a truly incredible experience to have family, friends, and community come out and support our fundraising efforts to find a cure for PTHS. This year’s race on April 12, 2014 was no exception. On this beautiful Spring morning, 225 racers joined us at Tanglewood Park, just outside of Winston-Salem, NC for the Race for Victor. Victor started off the race, walking one kilometer this year, and raising $11,733 in donations by friends and family who sponsored his walk. We had a raffle and lots of kids activities. The entertainment this year was provided by the talented Star Catchers, a performing group of adults with special needs in our community. Two exceptional guests with PTHS joined us for the race, Liz Jennings and Shanna McPherson and their sweet families. The Race for Victor raised $15,025 to go for research. It was a blessed day.
~Theresa Pauca, Victor’s mom
