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No Answers, Then One Option

At a very young age, I started experiencing minor seizures. We went to my pediatrician multiple times, recieving no answers. It became something that we kept under the rug and began to ignore. In seventh grade, I began suffering extreme generalized tonic-clonic seizures. They became progressively dangerous, which led to my epilepsy diagnosis.
 
I was put on multiple medications, but they were not a permanent solution. After many late-night visits to the emergency room, I was recommended to Boston Children's Hospital. They ran multiple tests and attempted a surgery, but it was just too dangerous. I was then referred to a very experienced team of doctors at the Mayo Clinic in Minnesota. We thought it would be a stretch, but it was our only option.
 
In September 2019, we traveled to Minnesota. A prestigious team of doctors met with me and my parents to say they could perform a surgery that has a high chance of success. They would place a device called a Responsive NeuroStimulator (RNS) that stimulates my abnormal brain waves. This was my only option for a shot to be seizure-free.
 
On December 3, 2019, Dr. Kai Miller, a well-known surgeon, performed a successful eight-hour surgery. Every three months I pay a visit to The Mayo Clinic to adjust the stimulations, and I am still on medication. But I am definitely on the right path to a solution.

 

A Wish, and an Idea

As a young woman with epilepsy, I qualified for a Make-A-Wish Northeast New York wish. Over the years, I have had many different ideas for my wish but never made a final decision. A few months ago, I met with a team that works for Make-A-Wish. We brainstormed for more ideas. Nothing really felt right. Until...

One night I was lying in bed thinking, If I could wish for anything in this world, it would be to help others. When I was first diagnosed, without medication I was having constant seizures. From those days onward, I could never imagine what it would be like if I couldn't afford the cost of seizure medication. I decided I wanted to use this Make-A-Wish opportunity to make a change and help people just like me.

My wish is to create a dedicated fund within the Epilepsy Foundation of Northeastern New York that will help people with epilepsy pay for their medication. The No. 1 reason for skipping doses is cost. I want to help others and possibly even change their life with this fund.

The Maria's Epilepsy Medication Emergency Fund will help raise awareness and money for people who are struggling to afford seizure medication. If I had to choose one thing to fix in this world, it would be a cure for epilepsy.

One day, I learned my life had changed. But one day, hopefully soon, I can change the life of others.

 

Maria Lutz, 17, is a Make-A-Wish Northeast New York recipient from Inlet, Hamilton County. A 2021 graduate of Town of Webb High School, she is attending SUNY Oswego, majoring in journalism and minoring in creative writing.

 

If you are interested in applying for Maria's Epilepsy Medication Fund, click here!

You can also show your support for this new fund by providing a contribution here!