The family of the 18-month-old girl from Minnesota who is allergic to water says that since her diagnosis in October 2017, they have had to readjust their entire lives to try and keep her as healthy and safe as possible.
Ivy Angerman of Hastings, Minnesota, has aquagenic urticaria, a rare condition so severe that any form of water, including her own sweat and tears, will cause her to break out in painful hives, blisters and rashes.
The hives develop rapidly after her skin comes in contact with water, regardless of its temperature, according to the Genetic and Rare Diseases Information Center.
“It has changed everything in our lives,” Ivy’s mother, Brittany Angerman, tells PEOPLE. “We’ve become an indoor family.”
Giving her a bath — even if it’s just for 15 seconds — will cause Ivy to be in “torturous pain,” says Brittany. They try and keep her as clean as possible, and limit bath time to just once a week, but sometimes they have to give her two.
Her parents and stepsister, Alexis, who is 12-years-old, try to keep crayons and markers away from her so she doesn’t get any markings on her that need to be washed off with water.
“It really hurts me to not have her play with markers, but she’ll get it on her and I will have to clean her with water,” says Brittany, who also has a 6-month-old daughter.
“There is a lot more TV time than playing outside,” she adds. “Even if she runs around the house she will get worked up and the sweating will cause all the symptoms to start.”
Brittany and her husband, Dan, are also rethinking future family trips. They once enjoyed a beach vacation in St. Thomas — somewhere they don’t think they can take her now.
“We think about Disney World and taking her to the ocean and how we might not be able to do that,” she says. “These are the places kids dream of seeing. I want her to live her life.”
Brittany describes Ivy as a rambunctious “little tomboy” who constantly wants to put her jacket on and go outside. But they only let her play in the backyard if it’s not raining or snowing.
It’s the unknown that scares Brittany the most, including the possibility that Ivy could eventually become allergic to water internally.
“I wonder if one day her throat will start to swell up when she drinks it,” says Brittany. “It’s already getting worse.”
Brittany can’t imagine Ivy even being able to go to day care one day. And she admits that she sometimes gives into her daughter’s wants more than she’d like to so that she doesn’t cry.
“I can’t turn her tears off,” she says, “I don’t want her to cry because then her face will burn.”
The family created a GoFundMe page to help them move into a new home that has a well, a purified water system and central air that would limit the severity of Ivy’s reactions.
“The house we’re renting now was built in 1901 and doesn’t have air conditioning,” she says. “It’s a house that is very hard to keep cool and will be extremely difficult for Ivy when it gets warm.”
Since Tuesday, over $20,000 was donated to the campaign.
“We are so grateful,” she says. “We really want everyone out there to know that. It means the world to us to have the support to help our daughter.”
Brittany’s step-daughter, Alexis, has adjusted “so well” to Ivy’s condition, she says. “She is very motherly to her. She’s worried about what she can do or can’t do. She looks out for her.”
Despite the hardships the family is going through, Brittany is able to find the blessing through it all.
“It’s definitely brought our family a lot closer together,” she says. “We’re all in this for Ivy.”