The family of a Wisconsin toddler born deaf and without eyes is turning to their local community for help raising funds to cover medical costs.
Calvin Brezgel was born with SOX2 Anopthalmia, a rare genetic disorder that in Calvin resulted in his undeveloped eyes and deafness. SOX2 Anopthalmia affects one out of every 250,000 people, according to the National Institutes of Health.
Calvin’s father, Dan Brezgel, 40, said the first few months of Calvin’s life were a struggle financially in addition to emotionally as the family tried to get additional insurance to help cover Calvin’s large medical costs.
“All that money we had for a rainy day was spent,” said Brezgel, who works in the IT department for the Kohl’s department store. “That was [in] a good two or three months.”
In addition to being born deaf and without eyes, Calvin, now 16 months old, suffers from seizures and needs oxygen to help him breath. The Brezgels, who live in Oconomowoc, have to take Calvin to different doctors and specialists about three times a week, Dan Brezgel said.
“He can’t really reach out,” said Brezgel. “He can’t look around to see what’s happening. We’re trying a new hearing aid. We’re hoping that definitely helps” with communication.
A geneticist who works with Calvin could find only 40 other cases worldwide of a patient with SOX2 Anopthalmia who had symptoms as severe as Calvin’s, Brezgel said.
It has been difficult trying to cover additional medical costs for Calvin or items that aren’t covered, such as neck braces or gas to get to the hospital three times a week, said Brezgel, who, along with his wife, Deborah, write about Calvin’s progress on their blog Caring for Calvin. The blog also doubles as a fundraising site. They also have two daughters, ages 2 and 4.
As the family struggles with finances, they have had some help from local businesses. Curly’s Waterfront Sports Bar and Grill in Pewaukee, Wis., is scheduled to hold a day-long fundraiser on Sunday for the toddler.
“We were all so touched when we heard this family’s story that we decided to put together this fundraiser and help as much as possible,” the restaurant management said in a statement.
Despite the challenges, sharing Calvin’s story online and at conferences has helped, Brezgel said, especially when other parents in similar situations say the family’s story is “inspirational.”
“As much as it’s stressful and … at the same time, he’s been a good influence for us and others,” Brezgel said.