After reading a magazine article about MPS VI research led by BioMarin, Isabel and her family left their life and loved ones in Guatemala in search for a new beginning. Now, Isabel has graduated from college with honors and is on a mission to make a difference in the world, advocating for others living with rare disease in the state and national capitols.
Q: Tell us a little bit about you and your family.
My family is originally from Guatemala but moved to the United States in 2003 to participate in a clinical trial. My parents and my sister are my greatest support systems.
Q: What is the one thing you want others to know about living with MPS VI?
I want other people living with MPS VI to know that they do not have to walk alone in the journey. The MPS Society can help them to connect with other individuals with MPS VI and to find resources available for them.
Q: How do you like to stay involved in the MPS or rare disease communities?
I am committed to helping individuals with rare diseases by sharing my story and by organizing events to support and raise awareness about different medical conditions. Sharing your story is an important tool to inspire and support others with MPS.
Q: What makes you as Isabel “rare”?
I was born with a rare genetic disease that affects a small population in the world. My disease is part of me, but does not define who I am. Having a “rare” disease gives me an opportunity to teach others that your attitude can make a difference in how you choose to live life.
Q: Name someone who is an inspiration in your life and tell us why.
I am inspired by my friend Kendra Gottsleben, who always reminds me that “if life gives you lemons, make lemonade.” That proverb comes loaded with optimism and a positive attitude used during difficult times. Lemons are the hardships we go through, but if we use them to make lemonade, we will see the positive side of adversity.
Q: What is your favorite book and why?
One of my favorite books is Live by Sadie Robertson. I enjoyed every page with words of joy, life, and empowerment. The book is a road map of how to live life to the fullest with a reminder that Jesus is the center of our lives.
Q: What is one of your favorite BioMarin memories?
I have beautiful memories at BioMarin. A tour of the laboratories was my favorite BioMarin memories. It was a great opportunity for me to observe the manufacturing process of different drugs. I am thankful to everyone who has contributed to the development of medicines for people suffering from rare diseases.
“Choose the support that is right for you. It is important to surround yourself with positive and trustworthy people who can walk by your side on good and bad days.”
Q: What’s the best piece of advice you’ve ever been given?
Choose the support that is right for you. It is important to surround yourself with positive and trustworthy people who can walk by your side on good and bad days.
Q: If you had to pick one song to be the theme song to your life what would it be and why?
I have two songs. One is “The Climb” by Miley Cyrus, which is about not giving up in life. The other song is “Overcomer” by Mandisa. “Overcomer” is about overcoming challenges in life while knowing that God is always in control.
Q: Tell us one goal you look forward to working toward accomplishing in the next few years.
One of my future goals is to lead a wish fulfillment organization for adults affected by a rare disorder. Those wishes could include a family vacation, a desired item, attending an event, etc. The goal is to create a special, meaningful memory.