Lily’s mission is simple yet powerful: to give back to the community that supported her during her own journey with Charcot-Marie-Tooth (CMT), a neurological disease affecting her nerves and muscles. As a Muscular Dystrophy Association (MDA) ambassador, she is passionate about spreading awareness for people living with muscular dystrophy and making the world more accessible for people with disabilities.
From bringing awareness to more accessible spaces in her school to running a non-profit that distributes period products to people in her community, Lily is not afraid to stand up for what she believes in and make an impact. Her advocacy extends to MDA’s annual summer camp, where she personally found a sense of belonging and a passion for disability advocacy while attending camp. The lifelong friendships and invaluable experiences she gained there are a testament to the transformative power of MDA Camp.
Her personal motto, “doing it anyway,” speaks volumes about her determination to navigate ‘a world not built for her.’ Lily encourages everyone with muscular dystrophy to persevere and not let their condition define them.
This year, we’re setting an ambitious national fundraising goal of $1,000,000 for our ‘Be Their Muscle’ campaign. With your support, we can make a difference in the lives of hundreds of children, just like Lily, by providing them with the opportunity to attend MDA Camp.
Join us in supporting MDA by being part of our ‘Be Their Muscle’ Camp on Saturday, April 20th, or by donating to this important cause.
We had the privilege of sitting down with Lily to learn more about her passion for advocacy. Watch this inspiring recap video or read our full interview with Lily below.
What has the last year of your life looked like? What are some of your goals and dreams?
“The last year of my life has been insane. Looking back to a year ago, lots of things have changed. I’ve done a lot of projects this year through disability advocacy. I spoke at a conference in Boston this year. I filmed a short film in New York with the MDA in the summer. I’ve done many interviews just speaking about life with a disability. And then personally, I run a nonprofit that distributes period products to people in my community. We’ve grown a lot in a year and we’ve made a lot of progress. I’ve been kept extremely busy with disability advocacy and advocacy for menstrual justice, and it’s just been a crazy year of growth and change. And it’s been incredible.”
Your advocacy is so inspiring. When you left last year, we all just kept talking about what an inspiration you are. Why is it so important for you to be an advocate for those specifically living with muscular dystrophy?
“I want to make the world a better place for people with disabilities. I want to make the world more accessible and more understanding. Ultimately, I don’t want people to have to go through living with muscular dystrophy. I focus on anything that I can do to help with that. I’m not a scientist, so I can’t find the cure, but I can raise funds for cures and I can advocate for quality of life and policy change, and understanding within communities towards disabled people and disability. That’s just important to me. I don’t want people to feel alone, isolated, or different because they are living with a muscular disease.”
Can you elaborate on the MDA summer camps and what the community you have found has meant to you?
“Before I went to muscular dystrophy summer camp, I had only met a few disabled people. I was about eight years old, so I’d met a few people here and there who had various disabilities, but I had never been in the type of environment that the MDA camp provides, where almost every single person that you interact with has some sort of disability. The people who are able-bodied are educated and passionate about supporting you. So, it was transformative to be in that environment and to be with kids who understood what I was going through and understood my daily challenges.
I met my best friends that first year, and we went through many years of camp together. We still keep in contact to this day. I keep in contact with my old camp counselor. It’s incredible the kind of impact that a couple of years of camp can have on your life. I think it’s important to feel empowered living with a disability, and seeing people from all different walks of life come together and have a week of fun that’s not necessarily focused on disability, but accommodates your disability is incredible and not something that I can easily describe.
I think that if you’re watching this and you have muscular dystrophy, give it a try, see it for yourself. And if you don’t have MD, maybe consider being a counselor and feeling the energy and just feeling how incredible these kids are. It will change your life all around. MDA camp is incredible, and I think that it’s a unique opportunity for kids to feel empowered through their challenges.”
What are some of the challenges that the community you have at summer camp understands, but maybe people who are able-bodied don’t understand?
“I remember when I was younger, I would give my friend a call and I would say, I’m in so much pain today, or my wheelchair is causing me to get so many stares in public or someone said something rude to me. I would call my friends and I would just have them sympathize with me. Your able-bodied peers can’t understand those types of challenges and how they really feel, so having that community in your local area is so important to have that support system of people who intimately understand disability. It’s something that I still have and like I said, I still keep in contact with these people to this day. These bonds are incredible and they’re fostered through these summer camps and I think that’s so important.”
Community is everything. It’s definitely something we believe at Burn Boot Camp. You also mentioned that you found your voice through camp. How has camp empowered you and how the donations bring this dream to reality?
“I remember I was pulled out of lunch one day at summer camp. I was sat down in an interview-style setting with a camera and lights, just like we are in here now. I was about eight years old and they were like, just answer a few questions for me. And of course, I was in all my camp gear. I was probably dressed up in the theme of the day, and I got to speak to a camera for the first time. I truly felt empowered later on when seeing the video on the internet and seeing the comments and how it helped bring people to camp or to donate. It just led me to want to do more and to advocate for disability and just community and understanding.
I don’t know where I would be if I didn’t have that experience year after year with the MDA coming in and asking me to do interviews. I just think there’s something therapeutic about being able to speak about your life and have it affect other people and sometimes enact change. I think it was really something to be an eight-year-old in front of a camera and to be given that first glimpse of a voice. And it’s just impacted me to this day. So, I don’t know where I would be without that.”
We were really touched personally last year when you said you’re navigating a world that wasn’t built for you, and you’re trying to change that from within. That just really put things into perspective for us. Can you speak on that a little?
“Our world is designed for able-bodied people. Doors are heavy. Sidewalks don’t have curbs. Sometimes there aren’t enough elevators or ramps. Whenever I started using my wheelchair more regularly, I discovered these challenges. I did some digging into the law and how this relates and I just became passionate about advocating for change. I just don’t want anyone to feel the way that I feel when I can’t get somewhere in my wheelchair because there’s not an elevator or a ramp. I feel defeated and I feel as if I’m not welcome in a space.
I’ve really tried to speak up and use my voice and say, “Hey, this isn’t right.” Like at school, if there’s not enough accessibility, I’ve tried to speak up and try to get that changed. It’s just all about doing your research and talking to other disabled people and figuring out the challenges that are in our world, but then how can we fix those so that we feel welcome in spaces that we should be in?”
What does it mean to have partners like Burn Boot Camp and MDA come together to support families like the two that we have with us here today?
“It means a lot for Burn Boot Camp to host these events and really have their community rally together for the MDA. I think that we need to have more communication between our larger communities and these organizations that are helping our families. I think that’s the only way that we can get anything done. We need support from people who aren’t affected by muscular dystrophy to change the lives of those who are. It means a lot for people to come together and take time out of their days to really plan to make these things happen.”
Can you talk to me about how a single donation to MDA can impact someone with muscular dystrophy? Do you have a moment where you’ve seen that come full circle for you personally?
“A single donation can help pay for camp. It can help pay for research. It can help pay for support in clinics. So, I think that it’s so important whatever you can donate. It all adds up. It all comes together to create change in our lives. You may not always see it, but I promise we feel it. I remember going to summer camp and my mom mentioned that she heard how much it costs to send one kid. And I was thinking, wow, people care enough to donate to this organization to send us to camp, and they don’t truly know what camp means to us. I think it’s amazing that people have the hearts to donate. And I think it’s important that we keep spreading our message to more and more people so that they do so. Even if it’s a small donation, it all adds up and it all means something to us.”
Talk to us about your personal motto of “doing it anyway.” What does that mean to you, and how do you hope it inspires others?
“Life with my disability looks different than other people’s lives. I do things differently day to day, but I don’t try to let that stop me. If I want to do an activity, I find a way to accommodate myself and I find a way to do it anyway. I don’t think that your disability should stop you, but oftentimes it does, because again, the world wasn’t built for us. I really try to push the boundaries and see what I can do to make things happen. Even if it’s hard, even if I’m exhausted, even if I’m in pain. I’m really focused on trying to make the world better for disabled people. So, if I can come first and shatter the glass ceiling, then that’s what I want to do. But I really wish that every person with a muscle disease, with any disability, felt as if they were able to do what they wanted to do anyway.”
You talk about if how if you can make experiences better for people living with MDA, you want to be that person. Have you seen that come to fruition?
“I’m working on it. I’m working with my school to make things accessible. It’s not enough just to fight for myself because oftentimes, I’ll put up with obstacles and just go around it, try to figure out a way. But to help other people is what really is my focus. So I’m working on the accessibility and how to make that better for the people that come after me. It inspires me to keep going when things are hard because I don’t want people to feel the way that I do when I can’t access what I need.”
What would you say to somebody who’s maybe thinking about donating and the impact it can have? “I would say trust that it has an impact that you may never see. I think that’s part of the beauty of it. You’re behind the scenes allowing things to happen with your donation and I think there’s a lot of value in that. But also, like I said, if you want to volunteer at camp or interact with the kids, that’s also another great way to see the power that your donation has. But I think doing your research and talking to muscular dystrophy patients will help you understand how far it really goes.”
Anything else within your advocacy work that you want to touch on as far as goals you have or things that you want to see develop?
“I just want disabled people in America to feel supported by their communities, by the government, and by their schools. I want us to not be in the background, struggling. I wish for us to be able to be in our communities and have accessibility and have everything we need. And so, I’m willing to do whatever I can personally to make that happen. But again, I think it’s incredibly important to have our able-bodied partners in that too.
I’m incredibly touched by the Burn community for coming together and using their muscles to donate to ours. I think it’s so incredible and something that is incredibly generous. I cannot thank their community enough.”
