Sunday, September 1

17-Year-Old With Spinal Muscular Atrophy Gets to Swim, Play Basketball and More.


For most teens, summer vacation is synonymous with spending long afternoons at the pool, inside jokes with friends and budding romances. At the Muscular Dystrophy Association (MDA) Summer Camp, kids like 17-year-old Maria Llave have a week to make these everlasting memories in a way that’s adapted to her and her wheelchair.“Getting a chance to actually play kind of feels like I'm normal,” she told InsideEdition.com last week while at the sleepaway camp. During Maria’s week at MDA Camp’s New Jersey location, she played basketball in a pool with lower nets so campers like her can participate.“In my high school, all the sports basketball, baseball, track any sport, I can’t really participate because it’s not accessible or adaptable,” Maria explained. “I don't experience what it's like to play basketball with my friends at school.”Maria was diagnosed with SMA type 2 before she was 2 years old.“It’s a progressive disease, so our muscles get weaker,” she explained. “We [can’t] walk, stand, transfer by ourselves. Even like little tasks in the day, like opening a water bottle, we can't do that. It's a disease that can be very hard to live with.”Because of her disease’s progression, Maria relies on her power wheelchair to get around, which wouldn’t be possible if the camp’s facilities didn’t have ramps that lead to buildings or flat, paved roads around the grounds, allowing her to manoeuvre throughout.“I call my chair my baby,” she explained. “My chair is my legs. Everyone uses their legs to get around … I rely on my chair. The chair is my best friend.”Bonding with her able-bodied friends is also not always possible, especially when the roster of events doesn’t accommodate for some of her physical limitations.“When we would say, ‘Let’s go to the mall together,’ I’ll be like, ‘OK, but how am I going to use the bathroom?’” Maria explained. “At home, my mom helps me or my dad. At the mall, who’s going to help me? Am I really going to have to carry my mom around for a friends' day?”Even her mom agreed, "Maria learning to be independent is very important." Maria explained that those sorts of things make living with SMA more challenging, but luckily, her good friends have gone above and beyond to make her life as normal as possible, starting with helping her go to the bathroom. “[One friend] saw how my aide at school took me to the bathroom and when we had Saturday practices for drama, she was like, ‘Do you want me to help? Would you like me to try?’” Maria said. “I’m like, ‘Abi, no, that’s kind of risque.’ But she learned how to and now we can go anywhere. She doesn’t mind.” In fact, Maria says her friend Abi has been a standout ever since they met in drama club her freshman year.“We just clicked and she started asking a lot more about my illness, which was very new because most of my friends don't really want to get to know it that much,” Maria said. “One day I saw her Googling what SMA really is, and that kind of touched my heart because no one's really done that before.”As far as teenage romances, any relationships at this age are complicated “SMA or not,” Maria said.“When you want to date someone that’s able-bodied, sometimes they don’t ask questions,” she explained. “They don't realize what I can do and what I can’t do. Immediately they go into an assumption that they have to take care of me and that’s going to be their job and that’s not how it works.” Alternatively, dating some who also has a physical condition “can be a little easier, because they do relate to you and they won’t judge you.”Her new love interest, Petros, whom she met at a different camp earlier this summer, has cerebral palsy.“He has more strength and he is able to get up and stand and walk,” Maria explained. “It’s different because he can’t relate to me on that same level because he doesn’t have SMA, but he still does have physical struggles so he can support me on that.” Maria also has to consider how her condition will affect what colleges she applies to this fall.“I want to stay close but not that close because I do want independence,” she explained. “I’ve been living in the same house for about 17 years. I love my mom and dad, I really do, but I want to experience life without them being by me all the time. In the real world, you need to start doing things by yourself.”But unlike other teens who seek the same thing when choosing to go away for college, she also has to consider what will be possible in terms of accessibility.“The No. 1 challenge would be picking a college that is completely accessible for me. Sometimes they have accessible dorms but then the laundry room is on the second floor and there’s no elevator. Then there’s the hassle of insurance. They have to give me aides and nurses, one-on-ones for maybe in the day for school, you know, getting books out, getting me ready in the morning. And then probably nurses for the night to turn me in bed. It definitely is a struggle."But her week at MDA Camp, surrounded by people going through similar challenges, just before she begins her senior year at high school, gives her a reprieve from a world that often overlooks her physical challenges."She always comes back with a smile," her dad said. "She’s interacting with kids with her same condition and their experience can help her overcome any challenges she may experience."Most importantly, it gives her a much-needed confidence boost for her upcoming school year.“High school is not easy. High school is really hard it’s very hard for anyone,” she said. “Sometimes throughout the year, I actually feel my confidence gets a little low, but then I look back at pictures of camp and my confidence goes way back up.” This year, for the first time since Maria started going to camp, she was paired with a volunteer counsellor, Angelee Delfin.“I love Angelee,” Maria said. “We connect immediately. Like, we’re never awkward with each other. She’s like a best friend or big sister I never had.”During the year, 21-year-old Delfin studies biology at Kean University nearby. She came to find out about the volunteer summer program from an MDA representative at her school several years ago, and eventually landed the seasonal job supporting campers one-on-one.“All of our counsellors show up a day before the campers arrive,” camp director Ken Slavik told InsideEdition.com. “They'll go through training, whether it be lifts and transfers. They'll go over all of the information specifically about the campers in their cabin. That way, they can work as a team to figure out the best course of action for the care of their campers throughout their daily activities.”He explained that they try to have a volunteer counsellor for each of their 37 campers that attend the New Jersey location. In total, 3,000 campers attend the 50 MDA Camps across the U.S.“We really want the program to help the campers build independence, experience their activities, build self-confidence away from their parents and really just have a normal camp experience,” Slavik explained. During the rest of the year, Slavik spends his time recruiting as many potential campers as possible between the ages of 8 to 17. “We will tell their parents this camp is at no cost to them we will go through every possible avenue to make sure their child is accessible to come to camp and there are no obstacles to prevent that,” he explained. Previously, Delfin has worked as a physical therapy aide, and sees this opportunity to not only as a way to gain experience working with people of varying abilities but as a fun weeklong getaway with Maria.“I met her last year and initially it was just getting to know each other. As the week progressed, our bond got stronger,” Delfin explained. “Seeing her again was just exciting. Catching up, bonding, telling each other what we’re feeling with this new year, what’s going on with us and just opening up.” Spending a week one-on-one with Maria from holding her up in the pool to helping her change and get dressed gives Delfin a unique perspective into the teen’s life.“She’s just a beautiful soul,” she explained. “She is so patient. She knows her body, she’s confident, she’s humble. She’s so understanding that people who are able-bodied don’t know much or are not as educated, and she doesn’t take that out on us.”Maria attributes her sunny outlook to her life motto: “Just smile and keep rolling. Keep rolling on your chair and just keep smiling and laughing.”Every camper at MDA Camp is living with a neuromuscular disease, and even though Maria has plenty of strong friendships and great support in her everyday life, the week surrounded by people who face the same struggles and conditions she does gives her a much-needed reprieve from a world built for able-bodied people.“My friends at MDA camp, they're different because I can talk to them about things that I can't talk to my friends at home about,” she explained. “When I come here, it's like people who have been in the same situations or same problems and they've gone through it and they can give me realistic advice and real support.“All my friends at home, they're great. They try to help me with as most as they can, and they're always there for me with physical support or emotional support,” Maria continued. “But they don’t really understand the actual struggles that I face on a regular day.”But Maria’s favourite activity at camp is swimming, where she gets to leave her chair behind and float around the pool like anyone else, able-bodied or not.“I can just swim and be free,” she explained.“It really feels good on my muscles so I stretch them out and have the liberation to swim around, go anywhere I would like and my muscles don't feel as heavy, so I can definitely move more and be more flexible in the pool, which I don't get to do with my chair.”As Maria prepares to enter her senior year of high school, she also said goodbye to camp for the last time, which she has attended since she was 6 years old.“MDA Camp was mostly like a second home for me,” she explained. “In the summer, it gave me a week to be completely myself and to be by others who can relate to similar situations, or friends that I will keep forever.”

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