There’s existing, and there’s thriving; 18 year-old Lauren Walier gives me cause to reassess how I’m living my life. She’s the founder of a 501c3 nonprofit foundation, the most dedicated ballroom dancer, and an inspiration. Diagnosed with Cerebral Palsy at the age of one, Lauren has been fighting her entire life. Coined, “The Forgotten Disability," CP currently has no federal funding for research and little awareness. Tired of waiting for action, Lauren took matters into her own hands and started the “Make Lemon Aide Foundation for CP." I recently talked with her about the foundation, ballroom dancing, and her motivation.
Jilly: In your own words, what is Cerebral Palsy?
Lauren: The disability that affects a person’s function. It’s caused sometimes by a brain bleed; this can affect all four hemispheres of the brain and affect both gross and fine motor skills. With my surgeries I have a more mild case now, but began as a moderate case. Some cases are so severe that a person will never be able to walk, talk, feed or dress himself; some have several seizures a day. It all depends on the case- this disability is very individualized. There isn’t any federal funding for research or protocol because there are so many different people with different cases; it’s hard to address the disorder as a whole.
Jilly: What led to your diagnosis at the age of one? In what areas were you struggling?
Lauren: I stopped growing very early on in my mom’s pregnancy. My mom got very sick, I wasn’t growing, and there was a major possibility of me not living. I was born at 27 weeks, and remained in intensive care for 3 months. I had phenomenal care and doctors. I weighed 14 ounces and had a 0 percent chance of living, but I fought my way.
Jilly: What kinds of procedures followed the diagnosis?
Lauren: Well, I was in therapy from the day I was born. It was a traditional therapy setting, and I went multiple times a week, three times, for several hours. I graduated from that and went onto sports medicine. When I was 5 years old, I had a procedure that resulted in me re learning how to walk and crawl. Before this, I’d walk on my tippy toes. The surgery brought my heels onto the floor and improved my balance. My success over the past four to five years is because of the “Symptom Recovery Model” though, and I owe it all to them.
Jilly: We met in elementary school, and I remember how you preferred to wheel yourself. Have you always been driven and independent?
Lauren: I remember that, too. All the kids in our class would take turns pushing me. I’ve always been very driven, and I’ve always said that I never do anything halfway. Even when I was little, I understood that I’d have to work a whole lot longer to do the same things as other kids. I’m just learning how to drive now; it took a while to figure out, more so than others. With my disability, my parents have allowed me to be very independent, and that’s not the case with all parents, so I feel very grateful. They make sure I’m both functional and independent. I will never lose my drive to fight or do more, because my goal every day is to wake up and be one step ahead of my disability.
Jilly: Growing up, was there a moment when you realized you were different from other children? What has your experience with school been like?
Lauren: This is a very predominant question. Do you remember Mr. Johnson the P.E. teacher? We were all in gym class and it was “Exceptional Children’s Week.” I had a really bad aide at the time. Mr. Johnson pulled me aside from class and asked me if I had Cerebral Palsy. My parents had told me that some people use their diagnosis as a crutch or an excuse, and they didn’t want me to do that. When he asked, I responded back, “No.” He looked to my aide and asked, and the aide responded back that I did have CP. Mr. Johnson asked if he could share this with the class, and I was like, “Okay, well I don’t know what that is but sure.” Mr. Johnson got in front of my gym class, not knowing that I was unaware of my diagnosis, and said something along the lines of, “This is Lauren, and I’m very honored to tell you about her. She has Cerebral Palsy and works very hard to do things every day,” That day I went home and asked my mom if I had Cerebral Palsy; this was a big turning point for me. I always knew people looked at me, but I thought it was because I had a really cute outfit or cute shoes on. I wouldn’t have wanted to find out about my diagnosis any other way, because Mr. Johnson put CP so positively. I had a lot of issues with teachers growing up- some were very reluctant to accommodate me. They wouldn’t reduce work or explain things over because I didn’t look like I had a disability. They didn’t understand that I still needed a little boost. Mr. Johnson was one person in school that was always encouraging. He’s my hero.
Jilly: When did you accept your diagnosis? What does living with acceptance feel like versus without it?
Lauren: I live and have lived accepting my disability I think every day. I think I’ve had my doubts, like, “Why me?” “Will I get married?” “Will I have kids?”- basic worries. That was a short period in my life. I love who I am and the way I am today, because I meet so many phenomenal people who I wouldn’t have met otherwise. There are always days in dance when I can’t do this or that with my foot. Ballroom dancing has brought on the most conflict I’ve ever had with my body. I love that because it offers a lot of areas for me to grow. After I go home, I constantly wonder what I can do better or work on. I’m very dedicated to my dancing like I am to my therapy. And I think that has to do with how I was raised. Through my struggles, my parents were always encouraging and supportive, but they didn’t treat me like, “oh, you poor thing.” They would say, “No, you’re going to get up and do it.”
Jilly: Is acceptance necessary in the search for a cure?
Lauren: I absolutely think so, because without accepting yourself how you are, you are constantly trying to find how to get rid of who you are. You should be searching for a cure because you want the best quality of life; if you don’t like yourself, you aren’t going to get very far.
Jilly: Tell me more about the “Symptom Recovery Model.” Why weren’t occupational and physical therapy enough?
Lauren: The “Symptom Recovery Model” is an advanced physical therapy program that changes the way your body functions. You start from the root cause of your diagnosis and work from there. When I started the program in the sixth grade, I was basically dying. I was dependent on my wheel chair, and didn’t have enough oxygen to breathe. I just started puberty, so my body was trying to operate on cylinders that were tired and worn out; I was on the low end of the spectrum. Through the program, I went from wheelchair, to walker, to crutch, and now cane. I’m hopeful that my cane will be gone by my next ballroom performance. The end goal of the program is that no one will ever know I have Cerebral Palsy, and I am very close to that. My doctor recently told me, “You are the reason why you are where you are; you have control over that.” After working really hard, it’s so nice to hear that. It’s such a blessing not only to be alive, but also to function at the best of my ability. If I hadn’t found that doctor at that time, I would still be in a wheelchair. That’s why I want to change the world’s view on typical therapy. It’s great for a certain population of people, but that other population deserves much more than they are given.
Jilly: What was saying goodbye to your wheelchair like?
Lauren: Oh my gosh, saying goodbye to my wheelchair was one of the best days in my entire life. I don’t know if you remember my purple wheelchair with stars and moons all over it - it was pretty fancy. I was so excited to pick it out, and I never thought at that point that I would be dependent on it. When it went away, I thought, “This is real, this is working.” It was one of the biggest turning points in terms of physicality. It made me want to fight that much harder and prepare for the next obstacle. Every gain is such a boost; it’s like all your hard work pays off.
Jilly: There aren’t many trained CP therapists. How are you working to solve this problem?
Lauren: There are a lot of therapists in the traditional setting, but not the “System Recovery Model.” Through my organization, we want to train therapists in this program all over the world, so families won’t have to fly to places like Atlanta to receive therapy. This will make it so much easier for families.
Jilly: You founded the “Make Lemon Aide Foundation for CP.” Why? Where did the name come from, and what have you learned from running the organization?
Lauren: I started the “Make Lemon Aide Foundation for CP” four years ago when I visited the CDC center in Atlanta to find the facts about my disability. I learned that 17 million people are affected by this illness worldwide, and that it has no federal funding for research. I sat there and thought, “Okay, this is why nothing has been happening my entire life.” We live in a wealthy country; more should be done. I was inspired and angry. I have my voice, something that many with CP don’t have. Before I began I started the organization, I was involved with some other nonprofits. I broke away to do my own thing because my goals were different. Our goals are: 1) to raise awareness, as no one knows what Cerebral Palsy is or what the abbreviation “CP” stands for, 2) to train therapists, and 3) we want one day when those people are taken care of, to put our funds towards research. So if people choose not to participate in therapy, there are other options available. I chose the name because when I was five years old I had a lemonade stand for someone I watched with cancer on “The Today Show." I told my mom I wanted to help her. So with the name, I went back to my roots, and to where all the giving began. Anyone can have a lemonade stand; we will embrace with open arms anyone who wants to help us. I want everyone to know what CP is and what it does; it’s called “The Forgotten Disability," and that isn’t acceptable. I want to be the one to change that.
Jilly: Does it look like federal funding for research will become a reality anytime soon?
Lauren: I would hope so. I’m going to try my best to make sure that it does. But we aren’t going to sit around and wait for them to act; we will take matters into our own hands.
Jilly: How much money have you raised thus far? Have you witnessed the effect of your organization first hand?
Lauren: $140,000 this far; we’re pretty proud of that. It took a lot of funding to accomplish this. It may seem like a lot, but we need to go so much further. That’s why we need everyone’s help. And yes, I’ve witnessed it first hand. We have our annual “Walk-Run-Roll in Lauren’s Shoes” in Buffalo, NY. There are lots of parents of children with CP crying and thanking me because they found other people to connect with. The CP community doesn’t get to connect often. Our mission that day, and for all events, is to bring the CP community together. Based on the feedback, we have achieved that goal.
Jilly: What is your greatest achievement within the organization? What do you hope will become of “Make Lemon Aide.”
Lauren: I think our greatest achievement is the fact that we have the ability to change people’s lives and give them a better quality of life, and the events that make people with CP feel loved and special. One of the most exciting achievements was when we partnered with “The Buffalo Sabers.” We took 15 kids to a Saber’s hockey game, and they sat in seats donated by them. After that, they got to meet some of the all-star players; it made them feel like a million bucks. Some of them met their idols that day. I want the organization to blow up, and for everyone around the world to know what Cerebral Palsy is. That is what it is going to take to help all of these people.
Jilly: On the matter of personal achievement, how long have you been ballroom dancing? What made you want to learn?
Lauren: I’ve been dancing since November of last year; I was 16 when I started. I wanted to ballroom dance since I was four years old. I grew up watching old old movies, and the dancing in those movies inspired me. I said, “I want to do that one day.” It’s always been a dream of mine. For a while, it couldn’t become a reality because of the wheelchair. My goal with dancing is to one day be a professional and teach kids with CP and other disabilities how to dance. I’d be sure to tell them, “Don’t let your disability tell you what you want to do.”
Jilly: Did you ever have second thoughts or want to quit? Why did you ultimately decide to continue?
Lauren: I don’t think I ever wanted to quit dancing. I’ve been frustrated that my body can’t always do what I want it to do, but I sit down and figure out another way. Every day I try to make it my goal to look like I don’t have Cerebral Palsy; my partner tells me how much better I’m doing. Dancing has brought me so much happiness and I hope to go far with it.
Jilly: What does it take for anyone to achieve a goal? What does the process look like?
Lauren: I think that what it takes is constantly believing in what the goal is; if you have doubts, reassess why that was the goal in the first place. Sometimes you have to give yourself a break. Dreams and goals require you to put in hard work. Ask, “What’s the dream, what’s the goal, what’s the plan?” The most important thing is to remember "why."
Jilly: The phrase, “be courageous” is all over your site. What does it mean to be courageous?
Lauren: To me, being courageous means to always keep a positive outlook and to always have that drive and that fight. If you have CP, you have to work 1,000 times harder. They’re courageous without even knowing it. Not everyone has that fight, but most of the kids I’ve met with Cerebral Palsy do. Courage is to know what your goals and dream are, and not let anyone or anything stop you.
To learn more about Cerebral Palsy or donate to Lauren’s cause, visit www.makelemonaide.org