WEST DES MOINES, Iowa — Only about 15 people worldwide have a genetic condition called RAB11B, according to one University of Iowa professor. One of them, 8-year-old Kiran Valji, lives in West Des Moines.
Kiran’s mom, Holly Messenger, believes her son could be in a wheelchair for the rest of his life. The 8-year-old continues to grow and now needs a wheelchair ramp on his family’s van to go about his day.
“(His condition) affects us in every big decision we make,” Holly said. “We chose this house because it was a ranch house and we knew it would be accessible for him.”
She said Kiran was born with RAB11B, which causes him to be nonverbal.
“With that condition also comes intellectual disabilities, vision issues, motor issues,” Holly said.
Moon Ley Tung, University of Iowa genetics and genomics assistant professor, said the small group of people with the genetic condition are between the ages of 2 and 22.
“This is a very rare condition, so it hasn’t really been studied very much,” Tung said.
RAB11B was only discovered in 2017, there are currently only two published studies on it and no clinical trials have been conducted so far.
“There is actually no therapy to treat any of the symptoms,” Tung said.
To take Kiran to his medical appointments and even out on errands, Holly has to take Kiran out of his wheelchair and carry him into the car.
“He’s getting heavier,” Holly said. “He’s over 50 pounds now. To transfer from his wheelchair to a carseat is just getting to be a feat more than it used to be.”
That's why she’s asking for $20,000 to cover the costs of making her van wheelchair accessible.
“I also have to think about my health and not hurting my back with all of the lifting,” Holly said. Overall it would be just a huge help.”
Money raised will cover about half of expenses needed for the modifications. Anything beyond that will go towards additional expenses like getting a rental car while the van is being worked on.
Donations can be made through Holly’s GoFundMe.