Imagine being born with a disease so rare doctors struggle to diagnose it. Imagine having surgery on your jaw at two weeks old, living with intestinal abnormalities and being unable to talk.
Now imagine there was a way to help people who live like this every day.
Grace Brezenski was born in 2008 with Emanuel Syndrome, a genetic disorder caused by the presence of an extra chromosome. There are only about 500 reported cases in the world.
The fourth annual Hope for Grace fundraiser will be held at 5 p.m. tomorrow at the sand volleyball courts by the Williams Center.
There will be sand volleyball and water pong tournaments that will cost $25 and $7 respectively. Proceeds from the tournaments and a bake sale will go to the Brezenski family to help cover Grace’s medical bills.
Previous fundraisers have raised $600, $800 and $2,000 and have drawn anywhere from 75 to 100 people.
Grace’s parents, Amanda and Beau graduated from UW-Whitewater in 2003 and 2006. They said benefits have been a great help financially, especially in helping pay for things their insurance does not cover.
“This really means a lot to us because bills pile up when you have a child with disabilities,” Amanda said. “This year has been very difficult because Grace has been in the hospital a lot and we don’t have any sick days left.”
Amanda said it’s been tough making time for all of Grace’s appointments because she sees more than 15 doctors and specialists.
Spearheading the fundraiser is Beau’s former mentor, professor Kathleen Happel, who teaches adaptive physical education at UW-Whitewater. Happel said a big part of her field is raising awareness about people with disabilities.“What’s usually missing for people is a knowledge base of disabilities and how to treat people who have them,” Happel said. “Whenever people see Grace they feel connected and say they will come back next year.”
One student that has made that committment is wheel chair basketball player and senior Beth DeVault. DeVault follows the developmental PE track and hopes to one day help kids with disabilities, like Grace.
“I heard Kathleen talk about Grace in her classes all the time,” DeVault said. “Her big blue eyes brought me to her event and we’ve been buddies ever since.”
“She is a sweet, innocent little girl who deserves the best and I want to help her parents give her that.”