Hastings family holds fundraiser for CHARGE syndrome research
When Dallas Bauer was born, he was surrounded by doctors. Before his birth, his parents, Jackie and Scott Bauer, knew something was wrong with several of his organs, including his heart, brain and kidneys.
Shortly after, he had a genetic test done to confirm a diagnosis: Dallas had CHARGE Syndrome, a rare gene mutation that can cause an array of defects. CHARGE stands for some of the most common: coloboma of the eye, heart defects, atresia of the choanae, retardation (growth/development), genital/urinary abnormalities and ear abnormalities and deafness. Dallas has all those symptoms.
"When Dallas was born we were very sad, devastated, and overwhelmed by both the fear of the unknown and the loss of a life we had pictured," said Jackie. We were in survival mode the first year of Dallas's life. We were so busy trying to get him off to the best start possible, that we had little time to enjoy him as our baby."
Living with CHARGE Syndrome has meant Dallas has had to have several surgeries, procedures and hospital stays; hundreds of hours of therapy; and special accommodations to keep him safe.
"It just makes everything more challenging," Jackie said.
At first, he could only eat liquids and had to be fed through a gastric feeding tube. He had to have cochlear implants to allow him to hear. He has seizures, so the family has to make sure they're always prepared in case a seizure comes on. Dallas has a specialist for virtually every part of his body.
"Most weeks we had three to four appointments and the time at home was spent working on feeding and motor skills, or trying to keep hearing aids on, etc.," Jackie said. "He was very ill and had another surgery or procedure every time we turned around."
But since then, Dallas has been improving. Now 3 years old, he's able to eat solid foods, he uses some sign language and about three months ago started walking independently.
"He is wobbly and unbalanced, but he is walking more and more everyday and this has been incredible to see," Jackie said.
And his personality is hard to beat. He's outgoing, funny, social and has a lot of energy.
"One of the known characteristics of CHARGE kids is that there is a personality that comes with them," Jackie said. "They have incredible will power and a great sense of humor, and Dallas has these traits as well. He has brought so much happiness and love to many and we are lucky God gave him to us."
CHARGE affects about one in every 8,500 to 10,000 people. There are 38 people ages birth to 21 in Minnesota known to have CHARGE Syndrome, and 824 in the U.S.
With so few occurrences, the Bauers have learned first-hand how little the general public know about CHARGE. Everywhere they go, people ask what Dallas' condition is. Even when they go to the local hospital for minor care, physicians don't always know what CHARGE is.
To help raise awareness about the syndrome, the Bauers are holding a fundraiser event Saturday, Aug. 24.
"I want people to know what CHARGE is," Jackie said.
Charge it for CHARGE, which will be held at Dugarel's from 2 p.m. to 6 p.m., will benefit the CHARGE Syndrome Foundation, the Minnesota DeafBlind Project and Spare Key, all organizations that have helped the Bauers as they care for Dallas. Spare Key paid the Bauers' mortgage so they could spend the first month of his life in the hospital with him instead of working. The DeafBlind Project provided them financial support to attend the CHARGE Conference in Arizona, connected them with other Minnesota families who have deaf/blind children, hosted Mom's Retreats, provided a person to come into the Bauer home to teach them sign language, provided workshops related to Dallas' disabilities and gave Dallas an iPad. The CHARGE Syndrome Foundation has been a source of information and resources about CHARGE.
On Aug. 24, activities will include a bean bag tournament (check in by 1:30 p.m.; start at 2 p.m.), bake sale, raffle drawing, silent auction and BINGO.
Some items available for the raffle and silent auction include a handmade set of golf clubs, a New York Rangers hockey jersey signed by Hastings native Derek Stepan, a 42-inch flatscreen television, a compact refrigerator, a 14 karat Kortanite ring and a battery powered John Deere Gator kids' ride-on.
Anyone who would like to donate items for the event should call Jamie Zahn at 651-336-0392 or email email@example.com.
The cost is $20 online and $25 at the door. Ticket price includes food, beverage and a raffle ticket. More information is available online at chargeitforcharge.eventbrite.com.
"We do not know what the future holds for Dallas, but that goes for any child," Jackie said. "We have met so many wonderful people because of Dallas. His family, educationalists, therapists and doctors have made all the difference for us. We have been blessed with such wonderful support and that has made the journey with Dallas much easier."