A blind teenager will be competing in an Ironman triathlon after months of training to learn the route with a guide to prove to himself and to other blind kids that it’s possible.
Louie McGee, 18, is legally blind due to large spots that cloud his central vision caused by a rare, genetic disease.
Despite this, Louie has remained active – joining several sports teams in high school -and, last year, decided he wanted to compete in the grueling race to inspire other blind children.
So for three hours every day for the last six months, the high school senior from St Paul, Minnesota, has laced up his running shoes, ridden a bicycle and swam laps in preparation.
With the help of his guide, who will be attached to him the entire time, Louie is preparing to complete the 140.6-mile race next weekend in Louisville, Kentucky.
‘I was looking for something big so I could bring awareness to visually-impaired kids to reach big goals for themselves and encourage them to not be afraid,’ Louie told Daily Mail Online.
‘It’s hard because it’s a physical challenge; it’s not hard not because I’m blind.’
When Louie was five years old, his parents took him for a routine visit to the eye doctor before he started kindergarten.
‘He already had glasses for astigmatism but [the doctor]saw spots on his retina,’ his father, Greg, told Daily Mail Online.
‘And she said: “I’m not a retinal specialist but I suggest you go see one”.’
After two days of tests, Louie was diagnosed with Stargardt disease, an inherited disorder of the retina.
It occurs from mutations in the ABCA4 gene, which makes a protein that gets rid of vitamin A byproducts inside photoreceptors – or rods and cones that detect light.
Similar to macular degeneration, the disease causes progressive damage to the macula, an oval area near the center of the retina that allows for sharp vision.
Sufferers will experience blurred vision or even ‘blind spots’ in their central vision that may grow larger.
‘They told us that steadily he will lose his vision and there’s no treatment and no cure,’ Greg said.
‘So then we asked: “When do we come back?” and they said: “You don’t come back; this is it”.’
Stargardt is most often diagnosed in childhood and it is estimated that one in 10,000 people have the disease, according to the National Eye Institute.
Most people with Stargardt will have their vision progress to 20/200 vision or worse.
20/200 vision means someone has to be as close as close as 20 feet to see what someone with normal vision can see at 200 feet, and is also considered legal blindness, which is what Louie has.
‘When I am running, every time I step down, I don’t know if it will be slant or if I’ll trip so I have to watch my step,’ he said.
Despite Louie’s eyesight getting progressively worse, he’s always remained active.
Greg said he played soccer through his freshman year of high school, he goes skiing out west where he’s guided down slopes by his 15-year-old sister Carmella, he’s on the varsity swim team and he was on the track team – until he quit to train for the triathlon.
For most of us, even with normal vision, the Ironman Triathlon is one of the most difficult sporting events to compete in.
It consists of, in this order: a 2.4-mile swim, a 112-mile bicycle ride and a 26.22-mile run, over a 16 to 17 hour period and without a break.
Greg said when his son first approached his parents with the idea, they were firmly against it.
‘He came to us a year ago and we said: “No” and we tried to make it a succinct “No”.
‘He had never done any kind of distance or anything. But he wouldn’t take no for an answer. We suggested he first try half an Ironman.
‘And he said: “I’m not doing this for myself but to inspire other blind kids to find their adventure and doing half of something is not inspirational”.’
His parents conceded and said if Louie could find his own guide, make a budget and a training plan, he could do compete.
Louie posted his request for a guide on various local Ironman forums and eventually found Milan Tomaska, who has competed in and finished 10 Ironman races.
Tomaska volunteered to not only race with Louie but to train the teenager four to five days per week.
The two will be tied together during both the swimming portion and the run and will ride a tandem bike together.
‘When I’m running with Milan, he can tell me to jump down the curb or step up the curb or swerve to miss the pothole,’ Louie said.
‘And Milan has been great. He’s not been doing this just to race another race. His only goal is to get me across the finish line.’
Currently, Louie trains three hours a day before and after school and on the weekends.
‘I’m as ready as I’m going to be. It’s going to come down to a mental game,’ he said.
‘I recently ran 21 miles so that’s close enough to a marathon where feel I could finish.
‘I am nervous I’m going to be hurting. My grandpa is in an elderly care facility and I’ve been joking with him: “Hey grandpa, reserve a wheelchair for me when I’m done”.’
Greg says it’s been scary to see Louie train for the marathon and get bumps and bruises along the way, but he’s proud to see his son try.
‘One of the things about blindness is that it’s scary for the kid and scary for the parents and it’s easier to hold your kid back than to let them try,’ he said.
‘That’s been his number one focus. He want to focus on possibility rather than disability.
In addition to training, Louie also runs a non-profit called Louie’s Vision, which aspires to help visually-impaired youth through mentoring and events.