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Isabel

Born July 1995  |  Concord, CA

Living with MPS 

"I’ve told my friends, my goal in this life is to make a change. That’s what I’m all about.” - Isabel

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“My life!” Isabel laughs. “Where to start? There are so many things I want to do... I have to live it! A lot of people tell me that I’m mature for my age.” She pauses for a moment, repositioning forward in her chair. “The reason why I might be mature,” she continues, “is because I have been through so much. You just have to accept it, you know? And sometimes it’s hard.”


Isabel wears optimism as beautifully as she does spring dresses—two things that she has customized to fit her joyous life. She has found incredible prowess on the runway. She fabricates unique dresses, skirts, blouses, combined with sequins, wraps, and scarfs—a coalescence of colors and styles reminiscent of her home country—in a brilliant display of design and craft. Her clothing line was highlighted by BayKids Studios, an organization that gives filmmaking opportunities to children and young adults facing serious medical conditions.


Born in Guatemala, Isabel was diagnosed at the age of two with mucopolysaccharidosis type VI (MPS VI). With no treatment available and limited medical resources, her parents were faced with a very tough decision: to save their daughter’s life, they would need to leave everything they knew behind—family, friends, jobs, and education—to come to the United States. “We put all of our life on hold,” recalls her mom Karla. “We couldn’t cross our hands and not do anything. We had to do what we had to do for Isabel.”


“I told my parents one day, don’t regret ANYTHING because I had the best childhood. I try to not focus on the hospital—the dramatic part—and that’s my goal as I get older, to stay positive. I’m just really blessed.”


“We don’t regret anything,” proclaims Karla. When Isabel was 13 she had surgery to relieve spinal pressure. “I remember waking up from surgery, and I couldn’t move. I thought, maybe I’m stiff or swollen—something like that—and it would go away.” But the immobility didn’t go away. Something in the surgery had caused her lower body to become paralyzed, forcing her into a wheelchair.


“It affected all of us honestly,” says Isabel. “It was completely unexpected.” Isabel’s body had changed significantly and it
made her feel shy. After she returned to school, her teacher encouraged her to go out and to talk with her friends. “I remember she said, ‘Go, you know, socialize!’” For sometime Isabel remembers shutting down. “I didn’t want it. I just wanted to go home.”


“When you’re thirteen, you care a lot about looks and friends,” Isabel explains. “But my parents told me, ‘You have two options: sit in your room forever or you can go out.’” Isabel chose the latter and hasn’t let her wheelchair decrease her desire to explore and enjoy the world.


“My favorite place to be is LA. I like San Diego too, but LA, that’s my place.” Isabel shares how travelling or even just going out with friends helps her to stay balanced and meet new people. “I’m open with people,” she explains. “I’m in a wheelchair, this is what happened, this is what I have to go through, but I am still able to try and have a normal life. That is my main focus as I get older; I know I am going to have appointments and medical stuff but I don’t want to be in that bubble. I want to be able to try and live as normal as I can.”


Now 21, living a normal life means having a busy schedule, but as Isabel will tell you, it comes with the territory. Day-to-day she can be found whizzing around Cal State’s East Bay Campus, going from class to class, or studying hard in the student center with her friends. She is working towards a degree in psychology, exploring her undeniable passion for math and science at the university level.


“And I love to dance!” Isabel blurts out with arms in the air. Her passion for dance and movement therapy came from Dancin Power, an Oaklandbased nonprofit that teaches interactive dance classes to hospitalized children. Isabel excelled and now volunteers with the organization and recently performed on stage during their 10-year anniversary gala.

 

Isabel balances all these activities with a weekly enzyme-replacement therapy (ERT) session at the hospital. She has been receiving ERT for over 12 years now and has embraced its necessity. “My life may not be easy and I may not be independent like I wanted to, and that sometimes sucks, but that’s what I have and I have to work with it.”


Be it hard at times for Isabel and her family, the challenges they have faced and moved beyond have created an unstoppable drive to do even more. “I’ve told my friends, my goal in this life is to make a change. That’s what I’m all about.” Starting in elementary school, Isabel organized clubs to help those less fortunate. In 12th grade she organized an event for Rare Disease Day that helped raise money for the National Organization for Rare Disease (NORD). “I want to do a rare disease day again, but at Cal State,” she proclaims. “The key to life is to give.


You have to give, but not expect to get anything... Even when you go through unexpected things, you have to believe and know that something good is going to come out from it.” With a wealth of wisdom, youthful exuberance and infectious laughter, Isabel is raising awareness and spreading joy while educating those around her.


She has pushed herself to explore the creative possibilities of a life that few could imagine. “People sometimes don’t understand how I can be so positive after I’ve been through so many hard things, and to be honest, I don’t know where I get it from either.” Her face brightens into a glowing smile. “Having my family support and believing in God. Yes! God, that is huge!”