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SALT LAKE CITY — To help him cope with his upcoming surgery for bladder exstrophy, a Salt Lake City boy decided to hold a fundraiser to raise money for a girl in Uganda to have a similar operation.
Leah Hullinger said her son, Mick Hullinger, was born with bladder exstrophy, an abnormality of the formation of the bladder that leaves it exposed on the abdominal wall, according to the John Hopkins Children’s Center. Bladder exstrophy is quite rare and occurs in 1 of 10,000 to 50,000 live births.
Mick was born in 2008 and had surgery to put his bladder back inside his body when he was 2 days old, Hullinger said. Since then, Hullinger said her 7-year-old son has undergone several more surgeries to deal with the “ongoing medical issue.”
“They have very undersized bladders,” she said. “His bladder hasn’t grown… (Doctors) kind of compare it to normally a bladder is like a balloon where it deflates all the way and pushes out all the urine. His (bladder) will be like a beach ball.”
As a result, Mick will undergo another surgery at the Seattle Children’s Hospital June 29 that will leave him catheterized for the rest of his life. Hullinger said he has started to feel apprehensive about his upcoming surgery and that he felt isolated with his diagnosis.
“Just recently, he has kind of really started to understand that he’s different, and he’s really kind of felt lonely about it because we don’t know anybody else who has bladder exstrophy,” Hullinger said. “So that’s kind of where this fundraiser came about… I think that helping others is always healing.”
Hullinger and Mick decided to join with the nonprofit organization, Association for the Bladder Exstrophy Community, to raise funds for others with bladder exstrophy who can’t afford the cost of surgery. They are planning a pop-up shop fundraiser to raise money for Allimena, a 5-year-old year girl from Uganda.
“She actually still has her bladder on the outside which is really dangerous because they are so susceptible to infection,” Hullinger said. “So they have a doctor set up and ready to operate. We have to pay the hospital costs and travel.”
Hullinger said the cost will be around $15,000 and they hope to raise the money during the fundraiser. The “Mick’s Art Show and Pop-Up Shop” fundraiser* will be held May 2 from 10-5 p.m. at 163 S. Main Salt Lake City. The sale will mostly feature art, but will also include some handmade bags, home decor and baked goods donated from local and national artists, Hullinger said.
“(Mick’s) getting very excited about helping,” Hullinger said. “It’s a great project, and I’m really happy me and my son can do this together… It’s taking the focus away from feeling like he’s alone, and he’s getting very excited about being able to help.”
Hullinger said 100 percent of the proceeds from the fundraiser will go toward Allimena’s surgery costs, and people can also donate on the Association for the Bladder Exstrophy Community website.
*KSL.com has not verified the accuracy of the information provided with respect to the account nor does KSL.com assure that the monies deposited to the account will be applied for the benefit of the persons named as beneficiaries. If you are considering a deposit to the account you should consult your own advisors and otherwise proceed at your own risk.
