MADDIE

“My superpower is I can do things with one eye that most people need two for!”-Mighty Maddie

One in 20 people will be diagnosed with a rare disease in their lifetime. The majority of rare diseases have no cure, like Coats’ Disease.

Maddie was diagnosed right after her 3rd birthday at the University of Chicago hospital. Two weeks prior to that, she was having a routine eye exam in Kansas City where they quickly realized something was VERY wrong with her left eye (we thought she had a lazy eye). Fast forward to a cancer MRI, 2 exams under anesthesia, and her first flight…we finally got our diagnosis: Coats’ Disease.

Maddie has had 11 surgeries in 3 years. It is still unsure how much blindness she has in her left eye, but we are hopeful she will not be 100% blind. Time will tell and our number one priority is to stop the bleeding/leaking of fluid in her eye so that we can eventually see the damage to her retina.

Mighty Maddie is a WARRIOR. She is incredibly resilient, strong, smart, and has a BIG personality! Maddie understands she is unique and doesn’t let that slow her down. She has found her voice and educates people she meets about Coats’ Disease.

There will be struggles but we will continue to encourage her to push past her fears when things are hard with partial blindness. She continues to amaze us and we know God has big plans for her! We pray that a cure can soon be found. ♥️

FAQ

At the Jack McGovern Coats’ Disease Foundation, we are often contacted by anxious parents or patients who are seeking information after receiving a diagnosis of Coats’ Disease. The questions below are provided as a resource to assist you as you and your doctor decide the best approach for treatment. These questions do not constitute any form of medical advice or diagnosis. Each patient is unique. An experienced retinal specialist who has examined the patient is the best source of information for diagnosis and treatment. We always recommend getting a second opinion.

Questions to Ask Your Doctor (Download PDF)

  • Ahead of any treatments or procedures, it is important to ask yourself and the doctor the following questions:

    • How do you know that this is Coats’ Disease?

    • Has your doctor treated other patients with Coats’ Disease?

    • Have you sought a second opinion? If not, please consult our Doctor Directory for knowledgeable doctors in your area.

    • What Stage of Coats’ Disease is he/she in?

    • Will his/her vision get worse over time?

    • Will the eye have pain?

    • Will his/her eye start to turn out? Is muscle corrective surgery an option?

    • Are cataracts likely?

    • How likely is glaucoma? (due to retinal detachment)

    • Is there calcification?

    • What is the anticipated disease progression?

    • Is there a thorough vision exam available?

    • Where is the vision affected? (central/peripheral/distance)

    • Does he/she have depth perception? (3D visibility)

    • What about the non-Coats’ eye?

    • To what extent is his/her vision affected?

    • Will we be able to use this as a baseline to measure progress/decline?

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