From Eye Diagnosis to Paralympic Dream
Mia Zutter had a very happy, active childhood growing up in Sun Prairie. She loved spending time with her family and she adored her older sister.
“I basically wanted to be her mini me. Especially in sports,” said Mia, 18.
Her favorite sport was figure skating. But in late elementary school and early middle school she noticed problems with her vision.
“I went in for a normal eye exam and I did really badly. Everyone was worried and sent me to a specialist,” Mia said.
The Zutters met Dr. Dave Gamm, UW Health pediatric ophthalmologist in Madison, the summer before Mia started seventh grade. He diagnosed her with a genetic eye disorder called Stargardt disease, which means she has no central vision. She can only see peripherally.
“I told Mia, ‘the bad news is you do have a blinding disease. You are visually impaired,’” said Gamm. “But it is not going to get much worse. You have been living with this for a while and you are finding ways to do amazing things, and that won’t change.”
Mia describes it as a cloudy, foggy, blurry image in the middle of her eye. She said nothing is black and she can see out of the side but not straight ahead. She can’t drive and it takes her longer to read something, but she has adapted.
Dr. Gamm added, “It is incredible to me how young kids adjust and excel despite their decreased vision and often assume it is normal – like everyone sees the way they do. Mia did not let this diagnosis slow her down.”
“It was hard news to hear when you are only 12 years old, but I was so young and I still loved sports so I just stayed positive and found a way,” said Mia. She had to give up figure skating, but found success running track and cross country with a guide. She was featured in local newspaper and TV stories for her dedication in the face of adversity.
Just three and a half years ago Mia tried her hand at skiing based on a family friend’s recommendation. It turned out to be a good decision. She uses a guide for competitive cross-country skiing (Nordic skiing). Races have taken her all over the United States. She has found success and a passion.
“I can’t drive because of my condition, so my dad drove me from Sun Prairie to Vermont for some of my first races,” Mia said. “My family has been so supportive. They do it all for me. I feel in love with the sport and they do will anything for me. It has been fun and I’ve found a great community.”
Mia skied with CXC of Madison and Ski Club MadNorSki of Madison during high school and they were instrumental in her development.
She also went to Germany for a competition while still in high school (pictured top). “I was alone in a foreign country, competing in a new sport, all while living with a visual impairment. It was overwhelming, yet a huge, important learning experience.”
Mia Zutter is now a freshman at College of St. Scholastica in Duluth. She competes on the ski team and is trying to be a normal teenage girl adjusting to life away from home.
Then she got news in February that would make her stand out from the crowd. She qualified for the 2018 Paralympics in South Korea. She will ski for her country in March in Pyeongchang. She qualified for the games based on her World Cup performance in Canmore, Alberta Canada in December but officially was notified in February.
“It is amazing. I have worked so hard and it will be such an honor to represent my country,”
The Paralympics are from March 8-18 and Zutter will compete in a variety of Nordic ski races.
“My whole family will be there to cheer me on and it is going to be an experience of a lifetime,” said Zutter.
“We just want her to be happy and we live a crazy life driving all over the place but it is worth it. We are so proud of her, “said Jenn Zutter, Mia’s mom.
Zutter had to qualify in races but there was also a lengthy process that took place at UW Health behind the scenes.
“There was an incredible amount of testing and paperwork that needed to be completed to prove she has a blinding disorder,” said Gamm. “The Olympic committees take it very seriously, as they should, so we had to prove Mia had Stargardt disease and she fit into a category to qualify as a Paralympic athlete.”
Leading the way was Darla Coullard, an ophthalmology technician, who works with Dr. Gamm at UW Health. She handled all the organization of records and getting the right documents to the right people at the Paralympics.
Dr. Gamm is also the director of the McPherson Eye Research Institute at the University of Wisconsin School of Medicine and Public Health. In those labs they are looking to find new therapies to treat and cure blinding diseases, including Stargardt.
“The work we are doing at the McPherson Eye Research Institute is aimed at one day improving the vision of people like Mia,” said Gamm.
Gamm has worked his entire career trying to provide answers and hope to patients.
“We unfortunately have to give patients and families sad and difficult diagnoses like this one, but I use Mia as my example. I say ‘look at this young lady. She did not let it slow her down.’ People with vision challenges can do so much. She is an inspiration to many,” said Gamm.
Mia is rather modest when it comes to the label inspirational.
“I don’t like when people say I am an inspiration. Look at my teammates on the Paralympics. There are war veterans who are missing legs because of roadside bombs or people born without arms. They are the real heroes,” she said. “I just try to have a good attitude and focus on the positives. I just keep going.”
Date Published: 03/05/2018