Victoria Summit’s mother describes her daughter as an old soul and a delight, who also enjoys cooking.
Summit was a typical, healthy 13-year-old until she was taken to the Bloomington emergency room for stomach pains lasting several days in October 2019.
Mindy Moat, Summit’s mother, said when Summit was taken to the emergency room she expected to be given a diagnosis a simple medication could fix. But now Summit is waiting for and raising money for a small and large bowel organ transplant after she was diagnosed with a genetic mutation disease.
She received a consultation through Riley Hospital for Children, and after a CT scan and bloodwork, the doctor informed the family that Summit had a small bowel volvulus, which is when the small bowel and part of the abdominal wall tissue become twisted. This could include a blockage, Moat said.
The next morning, Moat said Summit was taken to the hospital where she was examined by doctors and underwent a 5 1/2-hour-long surgery. The surgery repaired her twisted small bowel and removed part of her transverse colon, which is a part of the large intestine. The surgery also found something was wrong with her intestines, Summit’s mother said.
“She didn't make a full recovery, and it was just a very long, drawn out process,” Moat said. “The doctors at Riley were very stumped, didn't know what was causing it.”
In August, doctors discovered she was born with a mutation of the gene that controls the smooth muscle movement of the bladder and bowels.
Moat said the genetic mutation of the ACTG2 gene is usually caught when a baby is in utero because it affects the bladder. In Summit’s case, her bladder is not affected, so she was undiagnosed for 13 years.
“It's still kind of a mystery as to why it hasn't hurt her bladder in any way,” Moat said.
She said the disease has progressed quickly since Summit’s diagnosis. If Summit eats something, Moat said it takes more than 16 hours for it to pass through her stomach and into the intestine. Moat said Summit mostly depended on total parenteral nutrition, which is infusing specialized food through a vein, according to Mayo Clinic.
Moat said that their friends and family are fundraising for a small bowel and large bowel transplant, and the family began to work with the Children’s Organ Transplant Association a month ago.
“Such a big blessing to know that there's this organization that will help guide you along and give you ideas, and they will manage all of this fundraising for you,” Moat said.
Diane Partin, Summit’s grandmother and the Children’s Organ Transplant Association campaign manager, said that Children’s Organ Transplant Association will put all of the funds collected in an account for Summit to have for the rest of her life.
“If Vicki needs the money 10 years from now to pay for medical bills or housing or whatever it's needed for, the money will always be there.” Partin said.
Partin said the current goal of their fundraiser is $60,000 but that they would like to exceed that amount. Partin said the community support has been phenomenal, and they have currently raised $9,140.
“It's so heartwarming to see how so many strangers from all across the country, I mean from California to Washington to South Florida, Ohio, all over the country, people we don't even know, have been donating and helping out,” Partin said.
Adam Long, president and creator of the Best Day Ever Project, has collaborated with COTA and other organizations to help children and families through artwork.
“The original intent was to help kids,” Long said. “Help children or families through the use of artwork to help inspire them and give them brighter days.”
Long said he made an elephant painting for Summit that he’s working toward selling prints of to raise money for her cause.
Those interested in supporting Summit’s campaign can donate on her COTA webpage and those interested in supporting the Best Day Ever Project can visit the project’s GoFundMe.
