Did you know that an estimated 2.2 billion people around the world suffer from some sort of vison impairment or blindness? My daughter is one out of the many 2.2 billion people in this world that has been diagnosed with a vision impairment. My daughter is 13 years old and she has a vision impairment called Stargardt disease.
Stargardt disease is an inherited form of macular degeneration causing central vision loss. The progression of her vision could either stay where it is, or gradually get to the point to where she could go blind.
My daughter was diagnosed when she was 10 years old. However, leading up to her diagnosis was such a long, frustrating road.
I took my daughter to get a physical when she was six years old, for cheerleading.
At her physical, she failed her eye exam, and we were told to make an appointment with the eye doctor. At the appointment with the eye doctor, we were told that her eyes measured perfectly, that she was so young, and maybe she was just having a hard time reading the alphabet since she was just in kindergarten. So, we left.
A year went by and it was time for another physical. Another failed eye exam, so we were back to square one at the eye doctor again. Now mind you, my daughter was young. She loved dressing up, she loved fashionable things, and a lot of her friends had glasses. So, she did express a few times that she wanted to have glasses, too.
While at this appointment, I remember my daughter dragging out absolutely everything during her eye exam. She would say things like, “I think that is a lower case E,” or, ” I think that is a big I.” She did this with EVERY letter unless it was one of the extra big letters. At that point, the doctor looked at me and said, “Is there a chance your daughter could be lying because she just wants glasses?”
I remember telling her that she did express wanting glasses so she could be lying, but I just wasn’t sure, but maybe the doctor was right because she once again told me that my daughter’s eyes were measuring perfectly. She ended up prescribing her a very low prescription pair of glasses in the hopes that maybe my daughter would stop “lying.”
Leaving that appointment, I remember feeling really frustrated. I even continuously asked my daughter why she was lying. I begged her to tell me the truth. She kept telling me, “Mommy, I’m not lying, I really couldn’t see.”
Looking back now, I wish I wouldn’t have been so frustrated with her.
However, I didn’t know. I was being told by doctors that my daughter’s eyes measured perfectly and she shouldn’t be having any issues. Later on that year, my daughter’s teacher addressed my daughter’s vision and informed me that she was having a hard time seeing the board, and kids were now making comments to my daughter. We yet again went back to the doctor and once again, her eyes measured perfectly.
Throughout the next couple of years I was told that her eyes measured perfectly, and maybe she has anxiety and gets nervous when she does eye exams, so that was why she jumbled the letters. I was told to take my daughter to get an MRI and EEG to see another specialist. Everything I was being told to do, I did. I was pretty much being told that at this point this wasn’t a vision issue, this was a her issue, and there must be something else going on.
Finally when my daughter was 10, we went in for yet another appointment.
The second the doctor walked in, I expressed my frustration. I told him my daughter cannot see, she cannot see the board, her phone is up to her face, her books are up to her face, and children are now making comments about her vision. Not to mention,
she was getting headaches and everything was blurry.
The doctor did his eye exam and again her eyes measured perfectly. I left there just feeling defeated. What was I supposed to do now?! A half hour later, I got a phone call from the eye doctor asking if I could bring my daughter back in for further testing. The doctor really just wanted to do this for us.
Finally after four to five years, we had answers! My daughter was being diagnosed with Stargardts and we began to get our retinal specialist appointments in order. I went into the retinal specialist appointment with very little knowledge of Stargardts. All I had read on google was that my daughter could go blind. That was enough for me to read.
At the specialist, they did some testing, and it was confirmed my daughter did in fact have Stargardts.
At that time, there wasn’t really anything that could be done other than monitoring her progression. I left that appointment relieved that we finally had an answer, yet insanely sad and just worried. In the back of my mind all I kept thinking about was, “My daughter could go blind.” I wasn’t thinking of anything else.
Since my daughter’s diagnosis, we have come to the realization that these are the cards that we have been dealt. So, it is up to us how we play these cards. This past year my daughter became the youth chair for the Foundation Fighting Blindness, and I am the Vice President of Foundation Fighting Blindness Michigan’s East Chapter. Our main goal is to provide access and local resources to help those fighting a blinding retinal disease. We also fight and raise money to end blinding diseases.
Additionally, we participate in the vision walk and host multiple speaker series and webinars throughout the year, as well as different fundraising events. We decided to be a voice for Stargardts and our main goal is to help at least one person. I would never want a mother, or father, or anyone for that matter, to have to go through the struggle we had to go through just to get a diagnosis.
Our school district was and has been absolutely amazing with providing her with tools and resources, and just help in general.
My daughter does have an IEP. She also has a magnetic key for her locker at school (I wish I had one in high school). Her teachers prepare all of her assignments on enlarged sheets. She can utilize a tablet, magnifiers, and even a CTV to see the board. The use of laptops and technology throughout schools now has been really helpful as well. There is an endless amount of tools that are available for anyone with a vision impairment.
We have been so blessed with such a wonderful community providing so much support and willingness to educate and be on this journey with us. October is Blindness Awareness Month. Please celebrate this month and help us fight for a cure.
