The mother of the 21-month-old Minnesota toddler who has a rare and serious allergy to water says that while her daughter’s condition is worsening, she’s “grateful” for the dozens of people who have supported her daughter since the family first opened up about their story earlier this year.
In October 2017, Ivy Angerman, of Hastings, Minnesota, was diagnosed with aquagenic urticaria, a rare condition in which urticaria [hives] develop rapidly after the skin comes in contact with water, regardless of its temperature, according to the Genetic and Rare Diseases Information Center.
“It’s something we still can’t wrap our heads around,” Ivy’s mother, Brittany Angerman, told PEOPLE in February. “It’s just heartbreaking.”
Everything from Ivy’s own tears to her sweat can cause a reaction. Brittany says even touching snow (something the family has had a lot of this winter in Minnesota) will make her daughter break out in hives.
The reaction can last anywhere from 15 minutes to an hour, but if she takes an antihistamine — her only treatment — the reaction time is less. Brittany says the hives her daughter experiences have recently begun to feel hotter — Ivy is also starting to say how “hot” they are now.
“She used to love bath time and wanted to play in the snow,” she says of Ivy, who was diagnosed eight months ago. “But now she hides and doesn’t want to go into the bathroom or outside.”
For now, Ivy’s reactions happen after direct contact with water, but Brittany is frightened she could become allergic internally one day.
“There are so many unknowns,” she says. “It cause a lot of stress, but we get through it because we have to focus on Ivy.”
The lease on Angerman’s house — which was built in 1901 and needs major improvements— is up this month and the family is in a race against time to find a new home that has air conditioning and a better water system. Brittany is already dreading the warm weather that’s coming because the hot sun will cause her daughter to sweat, which will result in even more rashes and blisters.
Seeing her daughter afraid of her own body breaks her heart and makes her feel helpless, says Brittany. But creating a GoFundMe page and seeing the support they’ve received from strangers has raised her family’s spirits. They’re still hoping to raise money for a new home that will be better suited for Ivy.
“We can’t put into words how happy it makes us to know that strangers care,” she says. “It makes you realize how there are a lot of good people in this world.”
Brittany, 27, and her husband, Dan, 31, a truck driver, are also in awe of the 300 people who have written them offering words of encouragement and advice on what might help Ivy.
“People really want her to get better,” says Brittany. “We have a list of everyone’s suggestions that we are starting to try.”
The couple went from being able to give Ivy a bath twice a week to just once a week now. Her bedroom, which is on the top floor of the house, gets so hot that she’s starting to break out in hives in the middle of the night.
“She starts to kick under the covers like something is on her,” says Brittany. “It’s so hard to watch.”
One of the parents’ biggest struggles is trying to keep the almost 2-year-old calm so she doesn’t cry and create tears.
“The more she cries, the worse the reaction is,” she says, “but she’s too young to understand that.”
Brittany adds: “We don’t know what will happen, but we thank everyone for their support. It means the world. We don’t feel like we’re in this alone.”