Jillena’s Story…

Hear from Jillena in her own words:

Tell us about a time you have shown courage, resilience, and/or perseverance:

In 2019, I decided it was time to plug in to muscular dystrophy and see what I could do to help. I googled the words muscular dystrophy. There really was not a whole lot about the disease online. There also were a lot of people doing blogs about other illnesses, but not many doing blogs about muscular dystrophy. I discussed my findings with my older brother. He and I decided he would help me set up a page and we would talk about the quirky ways I get things done.

I didn’t expect my page or my YouTube channel to become as big as it did. However, it grew at a steady pace, with the help of my big brother, JD. I now know a lot of individuals with a form of muscular dystrophy and or a different disability. My followers were contacting me and telling me how they were using my videos to get educated or to educate others, but they had cerebral palsy, or spinal muscular atrophy. For example, I had created a video on YouTube that showed me drying my feet off with a hair dryer. That video was a hit, because other people reached out and said they had never thought of that before.

Once I realized how many I was helping, I wanted to do more. I decided that I wanted to do a fundraiser. I googled that and how to do it. Carol Abraham was the first name I found. The article I found said that she was an advocate for Limb Girdle Muscular Dystrophy Awareness Day. I reached out to her via Facebook (which I NEVER do if I don’t know you!) and asked her how to get started doing what she does. She guided me the entire way and assisted me in setting up my first fundraiser which was done at SKYZONE. She has been a great blessing to my advocacy.

I then decided to talk to Carol about how to do a State Proclamation. I received my first LGMD Awareness Day proclamation in 2019 with Carol’s help. A state proclamation is a way to make people aware that this disease needs attention! And that is what I have done for my county officials. I had never been to the mayor’s office before, but I was told by many followers that I should talk about my state proclamation to as many officials as I could.

I was a very shy person. However, after meeting my mayor in 2019, I was ready to take on the world. My brother was also not one to meet the mayor or any people like that. Well, I begged him to go with me. I told him he had to follow through with me to the end since he helped me start this.

Sadly, in 2020, right before I was going to meet the new mayor about my proclamation, my brother was killed in a car accident. This death has been the hardest death I have ever experienced. Absolutely the most painful. I was not going to go to meet the new mayor since JD couldn’t be there. (my brother). But then, my dad and grandpa said they would join me.

September 2020, I met Huntington mayor Richard Strick, who has been phenomenal for my community! He not only talked with me about LGMD, but he also did a city proclamation that year so the city of Huntington would also recognize the proclamation. Then, he invited me to be a part of his “disability task force.” Of course, I said yes because who can tell the mayor no?

I became a board member for the mayor’s council for community accessibility in Huntington, Indiana. We had our first meeting in May of 2021. This meeting was important, because, again, I had never done anything like this before, and I felt like I finally was a part of a change I wanted to be a part of. Our first project was making one of our parks accessible. Now, we are plugging in to do the rest of the parks here in town.

Then, also at that meeting, I learned one of the members was the assistant director of Huntington Area Transportation. He asked me if I really wanted a job and I said yes. Next day, I went in for a job interview, something I thought I wasn’t going to ever be able to do with having muscular dystrophy. His name was Eric, and he had cerebral palsy and was in a wheelchair full-time. I was hired in 2021, and I am still employed there. I love helping others.

So, I learned through all that I have done in the last six years, a lot of the accessibility problems we run into are simply because the opposite side has never thought about the issue being discussed until it was pointed out to them. If you have never been around a disabled person, it will be a learning experience for both of you once you are around a disabled person. If others and I do exactly what I do in our community and keep educating the world about how we can live just like them, I believe someday, we will all be able to get into whatever store we want to go into.

I do get discouraged and feel like what I am doing is not important. This disease can weigh on your mind and emotions. But I just keep thinking if I don’t advocate for us, who will?

How do you plan to use this award in pursuit of a dream or goal?

I started a book in 2018 with my brother. I wrote the book hoping to be able to one day give these books to newly diagnosed patients and their families. It is set up like a children’s book so that if an adult has it with little kids, it will be easy for the adult to show them all about LGMD.

I don’t make a whole lot of money so publishing this book has been more difficult as I had to navigate how to publish. And I am still learning what all needs to be done. If I did receive this award, I would utilize it to get my books published.

If any proceeds are made from the book, I would like the money to go to the best muscular dystrophy research center in the U.S.A. This could help benefit the muscular dystrophy community as a whole.

My end goal when I wrote this book was also to eventually create a series about the several different types of muscular dystrophy. I also considered just doing a series on the different types of LGMD. That thought has not been decided yet as I would like to get my first book published first.

I feel this book could be a great educational tool for everyone involved in finding a cure for muscular dystrophy. This book has also been dedicated to my brother, JD. I felt that was a great way to honor him for helping me turn my pain into power! I would love to be able to empower other disabled individuals with the help of this award!

More About The River & The Rock Perseverance Award

The award is a gift from the Nicholoff Family that experienced first-hand the importance of a positive attitude, determination, and perseverance while fighting muscular dystrophy. This award is funded by the Nicholoff family in honor of Phillip James “PJ” Nicholoff and his incredible memory.

Read about PJ Nicholoff who is saving many lives

Learn more about the award application process