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Black and Light: The Ongoing Saga of Louie McGee

Image of Louie McGeeLouie McGee. The name sounds fictional, as if it belongs to a protagonist in a children’s book who, after overcoming insurmountable odds, inspires others. But Louie is real, and, due to Stargardt disease, he’s legally blind. The St. Paul, Minnesota, 7th grader also plays soccer, runs track and swims. And he’s a superstar FFB fundraiser who’s youth-chaired VisionWalks and hosted Dining in the Darks — blindness awareness events, during which kids eat meals blindfolded — at his school, most recently last month.

Louie was also one of just 10 teenage volunteers nationwide given a 2013 Prudential Spirit of Community Award, and is now featured in the pages of TIME for Kids.

But the best way to get to know Louie is to let him speak for himself. What follows is a speech he delivered to fellow classmates, one that piggybacks on the theme of a video he co-produced two years ago:

My name is Louie McGee. I am 13 years old, and my doctor tells me I am blind. Not the kind of blind you think about when you hear the word “blind,” but legally blind, which isn’t as simple as black or light. I have Stargardt, a rare disease of the retina that takes away my central vision. That’s the strange part – losing part of your vision.

When I was 5, and found out I had this disease, my parents seemed worried and everyone stayed away from the word “blind.” I always figured “blind” meant all I could see was black, but that wasn’t me. In fact, nothing actually changed that much for me. I have this disease and it doesn’t hurt, and I can still see some stuff.

After my first visit to the eye doctor, my mom and dad found the Foundation Fighting Blindness, which is completely focused on developing a cure for blindness. I thought it was crazy that nobody had figured out any real treatments or cures already. I was also a little surprised that there was a group of people raising money and giving it to researchers trying to figure this all out.

I have been lucky enough to be asked to be Youth Chair for the Foundation’s Twin Cities VisionWalk three years in a row. Last year, I also hatched an idea we call “Dining in the Dark for Kids.” The dinner takes place at my school and raises money and awareness for vision diseases like mine. Last year, we had more than 300 kids come – along with practically every news crew in town.

It was a blast. I got to choose the dinner – spaghetti and Jell-O. The kids were handed blindfolds, then served the mystery dinner. It was a huge mess and a ton of fun! And with the games we had upstairs –  including navigating an obstacle course with a blindfold and a cane – I think they learned a lot about what it means to be blind, black and light.

All this stuff for the Foundation Fighting Blindness has not only been fun – we are actually trying to cure this. It seems like each month over the past year I have heard about a clinical trial that is saving or restoring vision for one of the many diseases those of us with some level of blindness face. And I feel like I’m a part of it.

My friends at the Foundation even nominated me for a national community spirit award for volunteerism. There were 28,000 people nominated, and 100 were chosen to go to Washington, D.C., and then the top 10 youth volunteers in the nation were selected. I couldn’t believe I was one of those chosen.

My mom and dad went with me to Washington. I met kids from every state and heard about all of the stuff they were doing to help people in their own communities. It was inspiring.

As I look ahead, I am full of hope. Hope for the future – near and far. I love playing soccer, skiing, running track and being on the swim team, and will continue with those sports. I have a lot of great friends and mentors. I can only imagine a bright future.

I am certain that we will find a cure for this disease – me and my friends at the Foundation Fighting Blindness. Even if we don’t, and I continue to lose more of my vision, I know I will continue to have the opportunity to do more great things. After all, it’s not as simple as black or light – and doing great things isn’t ever simple.

 


18 Responses to 'Black and Light: The Ongoing Saga of Louie McGee'

  1. Greg McGee says:

    Thanks so much for posting!

  2. Sally Cravens says:

    Way to go Louie! You are such an inspiration. My 10 year old grandson, Owen, was diagnosed with Stargardt disease in August of this year. I am also proud of him and how he is adjusting to his diagnosis. He is learning braille at a neck breaking speed as his vision specialist at school is astonished with his progress to date. He, like you, still plays soccer, swims on a Y team, and runs in triathlons in the Chicago area.
    It would be awesome for the two of you to connect online sometime…you know birds of a feather cliché.
    Thanks for sharing your story for all to read.

    • Dennis Stern says:

      I am the coach for beepball–baseball for the sight-impaired in this area–11 years–affiliated with the St. Paul Midway Lions. Our season is just about over–last meeting is this Saturday, 10:30 a.m. at Edgcumbe Field.
      thanks,
      Dennis 651-452-5324
      We have players of all ages.

  3. Kelly Egan says:

    Thank you for a wonderful story! My son also has Stargardt’s, he is 14 yrs old and we were just diagnosed in June of 2013. It is so good to hear how positive you are and all of the things you are doing for FFB and in your school with activities! Congratulations on receiving the Community Spirit Award!!

  4. mateen kazi says:

    I am mateen kazi and stay In india . I also have stargardts desease
    I read your post I really impressed with you I also have possitive atitude I am 23 years old I am looking for treatment but here in india there is no known treatment if you can help just reply me on mateenkazi90@gmail.com
    thaks
    your friend

  5. Erica House says:

    Hello my name is Erica and my son Logan was informed he has stargardts after many vision appointments.I try to stay positive but as a parent i was concerened bad I couldnt even talk about it with getting upset .Logan is so strong hes my angel!Anyway your story was touching .and I know they will find a cure thanks

  6. Satyajit says:

    Dear Louie McGee,
    I am Satyajit. I have been also diagnosed with stargardt’s in 2005 at Sankarnetralay in India.I am also looking forward to having the news of the latest development of this disese. I am fromm Bangladesh. The problem is most of the time I could not be able to keep myself updated with the news. As a fiend, I hope you will provide me with information. Now I am teachinf at a college in the country. I can not think that I will be lefally blind in the future. But I feel like the disese itself is getting deterioratyed very slowly. If you have any suggestion to take care of my eyes, then plese give me. I will be grateful to you.
    Much regards
    Satyajit

  7. Renée Reilly says:

    This is an amazing young man. Our 10 year old son was diagnosed with Stargardt when he was 7 years old. It has been quite a struggle for him this year. We actually held him back in K and we were grateful that we did b/c we found out he had this when he was going into 1st grade. He has great support from school and The Commission For The Blind and Visually Impaired, CBVI. Louie has inspired me to get our son involved in creating awareness for his retinal condition, which I believe will give him a strong sense of character and confidence. Our son is quite an extrovert so this will be right up his alley. Thank you for sharing your story Louie.

  8. Chris Fox says:

    Hi Louie,
    Having just searched the web for updates on stargardts decease, I came across your story, it great to hear the positive attitude you have to this decease

    Both my son and daughter also have stargardts which was diagnosed when that were both in their early teens they are now 24 & 26 respectively. The decease has not prevented either of them doing the same things as other kids/adults of their ages (other than driving) my daughter managed to complete her A levels, go to university, complete her LAB, and then finally achieve her goal and become a solicitor. My son has always loved music, so he enlisted into college, completed a music production course and then later a sound engineering course and now is actively producing his own music, he has completed a season as DJ in ibiza last year and plans to return this year for the season, he has also produced a ‘blindfold mix’ where he has mixed songs blindfolded, just to teach himself how to use a mixing deck in the dark booths of clubs.

    Don’t get me wrong this has not been an easy road for either of them, but I thought by posting this, it might help to encourage other with stargardts that dreams can still be archived.

    Kind regards

    Chris UK

  9. alba says:

    Hi my son is 16 and he just been diagnose with stargadt disease, as a previous mom,said I can not talk about it without feeling upset, we are just in the process of obtaining all the necessary test, to confirm it but 99.9 the specialist says he has it. all the stories above are very inspiring but what do we do now?

    • EyeOnTheCure says:

      It is truly exciting that there are currently eight clinical trials that are actively recruiting patients affected by Stargardt disease. To obtain information on any of these trials, please see the following link to the Clinical Trials.Gov website: https://clinicaltrials.gov/ct2/results?term=stargardt&recr=Open&no_unk=Y

      The Foundation Fighting Blindness is partnering with Sanofi to conduct a gene therapy clinical trial for Stargardt disease in Oregon and Paris, France. For more information on this trial, see the following link:
      http://clinicaltrials.gov/ct2/show/NCT01367444?term=stargardt&recr=Open&no_unk=Y&rank=2

      To learn more about the progression of Stargardt disease, The Foundation Fighting Blindness is also conducting a natural history study, referred to as PROSTAR. For more information on PROGSTAR, please see the following link: http://progstar.org/

      You may also be interested to know that there is a “Stargardt – Macular Degeneration” Facebook page where you can communicate with other families affeced by Stargardt disease. Here is the link:
      https://www.facebook.com/groups/Stargardts/

      I hope you find this information helpful. Please feel free to contact me if you have any other questions or concerns.

    • Kergin Ball says:

      Hi Alba…today is the beginning of my plight to help my nephew who was just told he has Stargardts. The first step for mr of course is to get a second and third opinion so I start my research. I saw this forum and your words brought tears to my eyes…it is exactly how I feel. Difficult to talk and harder to think about. Like your son, my nephew just turned 16 and like every 16 year old excited about getting his license. I am square one, is there anything you can share with me as I begin to try to help him. We are devastated …God be with you and your son……..Ginny

  10. Sandy engel says:

    My grand daughter Maci age 8 has just been diagnosed with Stargrandt… It is so heart breaking, my son and daughter in law are trying to get her into Mayo in Rochester Miinnesota. They have seen doctors in Green Bay Wisconsin. Please help and give us any suggestions that help my Maci and her family through this shocking disease. By reading your comments on this have given me some hope… It is so devastating

    • EyeOnTheCure says:

      I am sorry to hear of your grand daughter’s diagnosis. Hopefully, one day soon, Stargardt disease will be eradicated. The Foundation Fighting Blindness is partnering with Sanofi to conduct a gene therapy clinical trial for Stargardt disease in Oregon and Paris, France.
      For more information on this trial, see the following link:
      http://clinicaltrials.gov/ct2/show/NCT01367444?term=stargardt&recr=Open&no_unk=Y&rank=2
      Although your grand daughter is too young to participate in this trial, she may be able to get the treatment once it is approved by the FDA. The parents of your grand daughter should consider enrolling her in FFB’s “My Retina Tracker”, a free registry that can help with the identification of future clinical trials that are recruiting. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/

      To learn more about the progression of Stargardt disease, The Foundation Fighting Blindness is also conducting a natural history study, referred to as PROSTAR. For more information on PROGSTAR, please see the following link: http://progstar.org/

      You may be interested to know that there is a “Stargardt – Macular Degeneration” Facebook page where you can communicate with other families affeced by Stargardt disease. Here is the link:
      https://www.facebook.com/groups/Stargardts/

  11. Kergin Ball says:

    My nephew is 16 and was told he has Stargardts . Thus far he has been to one specialist. We are devastated and don’t know where to start. He was so excited about turning 16 to begin to drive only to be told about this disease. Please if there is any information anyone may have for me as to information on this disease and a specialist in our Pittsburgh area. Please help us to firstly get a second opinion…I pray the first doctor is wrong. Any information will be greatly appreciated. You can also reach me by messaging me on FB….thank you and God Bless …….Kergin

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