The Children’s Cerebral Palsy Movement is an organization that develops programming that is designed to improve the quality of life and future outcomes of children with Cerebral Palsy.
We believe in taking a whole body/whole child/whole family approach to healing. We aim to unite the CP community and deliver a comprehensive set of Community and Therapeutic Initiatives that strive to enhance satisfaction, improve function, and increase long-term success of these children and their families.
While we are based in Orange County, California, we collaborate and share stories from people across the globe. Our driving message is that cerebral palsy is a diagnosis, not a destiny.
We were blown away when we read a great story by David Whiting of the Orange County Register about a valedictorian with CP (http://www.ocregister.com/2017/06/02/twin-valedictorian-with-cerebral-palsy-earns-stanford-scholarship-plans-to-fight-disease/).
Lizbeth Gomez and her twin sister Elizabeth have broken barriers and embody the mantra that cerebral palsy is only a diagnosis. Their destiny remains unknown, but they are clearly on a path to greatness.
We’d like to go a little deeper in the conversation with these wonderful and strong young women, and the timing is great as October 6th is World CP Day.
Children’s Cerebral Palsy Movement: Tell us a little bit about yourselves. What are your full names and nicknames, if you have any? What are your ages, the type and severity of Cerebral Palsy you are each dealing with? What were your early years like growing up and how prepared was your family to deal with two daughters with CP?
My full name is Lizbeth Gomez, but I prefer to go by Liz. I am 17 years old. I have mild Cerebral Palsy. I love reading books, playing tennis, and spending time with my family. I will be attending Stanford University and will pursue a bioengineering degree.
My name is Elizabeth Gomez and my nickname is Eliza. I am also 17 years old. I have Spastic Quadriplegia, Cerebral Palsy. I love to sing and dance. I am currently attending Santa Ana Community college.
My family wasn’t prepared to have two daughters with CP. They weren’t even prepared to have twins. It was unexpected. At only seven months into the pregnancy, my twin sister, Elizabeth, and I were born. Because of complications during birth, both of us suffered many health setbacks. We had trouble breathing, eating, and were subsequently hospitalized for a month after our birth. As we grew up there were stark differences in our development; the most obvious one was that by the time I turned 1 years old I could walk and Elizabeth couldn’t. I could walk, but had impaired gait on my right side. We were diagnosed with CP at different ages. Elizabeth was diagnosed at 3 years old and I at 5 years old. My diagnosis was “mild cerebral palsy,” but my sister’s was “Spastic Quadriplegia.” The lack of oxygen at birth damaged the part of our brain that controls our motor skills.
Throughout our childhood, we would attend physical therapy sessions. Elizabeth would go more frequently than me because her case was more severe. We sometimes had to take the public bus to be able to get to our appointments. It was hard for my parents to take care of us. My dad had to go to work to put food on the table, so my mom stayed at home to take care of us and my older siblings. They both had a lot on their plate, but they managed well.
Children’s Cerebral Palsy Movement: As sisters both impacted by a diagnosis of CP, what has been your biggest struggle growing up and your biggest fears in planning for your futures?
Our conditions are different, and so our struggles have been different too. I struggled emotionally at times. At a young age, I didn’t want to be different. I just wanted to be like the other kids and feel included. But now I have embraced my diagnosis of CP. It’s what made me who I am today: a strong individual.
Having Cerebral Palsy influenced my plans for my future. I want to major in bioengineering so that I can help those also diagnosed with CP. A fear I have is that I won’t be able to find a better treatment to help my sister and others with CP.
My biggest struggle was trying to comprehend concepts at school. It always takes me more time to understand than the average person. As a result, I feel like I needed additional help. Eventually, I was able to understand by studying what I didn’t know. My biggest fear for my future is having to be independent. My family especially my mom helps me with some of the things that I can’t do like putting on my shoes. However, I need to learn how to do these things on my own.
Children’s Cerebral Palsy Movement: What have been your biggest successes? To what do you attribute these?
Lizbeth and Elizabeth:
We feel like our biggest success has been graduating from high school on the honor roll and being able to attend college. We did really well throughout high school because we worked really hard for what we wanted. We never really lost focus of our goal which was to go to college. A higher education is really important to us. Our family really supported us throughout our education which helped us out.
Children’s Cerebral Palsy Movement: Lizbeth, to what do you attribute your extraordinary success in school and also your talent in design, coding, and engineering?
I wasn’t born gifted. I actually had to work really hard to catch up to my peers. My speech was delayed at a young age and as a result, I had to go through speech therapy. I also entered preschool a year earlier so that I could interact with other children my age. Overtime, my speech developed well above the average because I read a lot and I threw myself into every learning opportunity. I found myself fascinated by the various topics in my science and math courses. To learn more, I joined clubs like Century’s Race Team where I learned about engineering by designing a solar-electric car with my teammates. I also took up an internship with The Furche Group where I helped conduct computational chemistry research. I learned how to code using python and learned more about quantum chemistry. Much of my success came from my desire to be able to attend college and help my family, especially my sister. There are so many people that contributed to my success. My family supported me in the many activities that I pursued. My teachers and mentors also played a big role. They introduced me to some of these activities and provided academic support that I needed.
Children’s Cerebral Palsy Movement: How have you both been able to achieve such a positive attitude in spite of your diagnoses?
Lizbeth and Elizabeth:
Having Cerebral Palsy has just been a normal part of our life. It’s the only thing we have ever known, but I think just having each other for support really helped us keep a positive attitude. We supported each other by sometimes doing our daily stretch exercises together. It helped knowing that we weren’t alone in this. We went through similar struggles like having leg pains which is common with children with Cerebral Palsy. We are each other’s support system. Having CP created a stronger bond between us.
Children’s Cerebral Palsy Movement: What types of therapies have you participated in and what have you found most helpful in improving your physical functions?
Being low income, we didn’t have many options other than physical therapy. This involved doing stretches for me (Lizbeth) and/or physical activities like throwing a ball around (Elizabeth) to stretch our legs and arms. Because my condition was mild, I was still able to join sports which I believe was the most helpful. My idea was that by joining sports I could challenge my limitations and improve my condition while simultaneously having fun. I was right. After years of participating in afterschool sports like tennis and basketball the results were noticeable. When I walk I don’t have impaired gait anymore. For Elizabeth, her physical therapy sessions have helped her with being able to stretch her arms and legs more. She was also taught how to dress herself through occupational therapy. This has helped her be more independent.
Children’s Cerebral Palsy Movement: Do you have any advice for other people affected by CP?
Lizbeth and Elizabeth:
We want to those living with CP to know that they should never give up. By giving up you give up any dreams you once had for yourself. Keep working hard and you can achieve your dream. Remember to always keep a positive attitude because it will increase your chances of success.
Children’s Cerebral Palsy Movement: If you or your family could have had more support as you were growing up, what would you have felt would have made the biggest impact? What did you feel like you were lacking? More physical therapy? A supportive community? Other?
I feel like having access to more and better treatment could have helped us dramatically. I know that there are many other types of therapy that could have potentially helped my sister better. For example, my sister’s therapists had recommended that she try aquatic therapy. However, we didn’t receive much information on the cost and how to make it affordable. As a result, my family believed that we wouldn’t have been able to sign Elizabeth up for it. We lacked and still lack knowledge on what resources are available for those with CP that are low income. I hope that one day there will be more resources to support low income families who have a child with Cerebral Palsy.
Children’s Cerebral Palsy Movement: What are your hopes and dreams for yourselves? What barriers would you like to break through?
I hope to become a bioengineer and help people with CP. I want to show that I am more than capable of achieving my dreams even if I am a minority, being a Latina in STEM, and having CP.
I hope to get a career and be able to live a normal life. I want to show others that just because I have CP it doesn’t mean I won’t live a good life.
Children’s Cerebral Palsy Movement: If you could share a message with everyone, what is one thing you’d like the world to know about Cerebral Palsy?
Lizbeth and Elizabeth:
We would both like the world to know that people with Cerebral Palsy can lead a happy life. Sure, it might come with many ups and downs, but having a positive attitude throughout is very important. We want our community to know that we should all help each other. Many children and adults with CP need people that they can rely on for help including just having a friend.
Children’s Cerebral Palsy Movement: What does CP advocacy look like to you? Are you interested in participating in an advocacy effort by joining forces with Children’s Cerebral Palsy Movement’s efforts to help children affected by CP?
Lizbeth and Elizabeth:
We believe that CP advocacy includes raising awareness of what Cerebral Palsy is. People have many misconceptions because they lack the knowledge of what it means to have CP. Parents with a child affected by CP could use more information to understand how to best help out their child. We would both love to join forces with Children’s Cerebral Palsy Movement to help others going through similar situations.
Children’s Cerebral Palsy Movement: Is there anything else you’d like to share?
There should be a better education system for those with learning disabilities. It’s just not inherently designed to provide them with the best education possible. My sister could have benefitted from having additional help in school. She did well despite the lack of resources. I think this is because she is a hard worker and does the best she can to ensure a good education. However, there could be improvements made to help more students achieve more academic success.
Children’s Cerebral Palsy Movement: As exciting as it is to have gotten a scholarship to go to Stanford, how do you feel, Lizbeth, about going away to college – being away from your family and Elizabeth? Do you feel that you possess the skills to live independently?
I have so many mixed feelings about this new chapter in our lives. I feel excited about being able to attend one of the best universities in America. However, it does feel a little heartbreaking to have to leave my family – especially my twin sister. Elizabeth and I have always been inseparable, but now we will be taking very different journeys. Moving away to college is such a big transition. I honestly do feel prepared. I have always been aware of my condition and what I need. For example, I keep track of when I need a new prescription to help with the leg pains. I have always tried to be as independent as I could because I knew that the day would come when these skills would come in useful.
We want to thank Liz and Eliza for sharing their story with us. Do you have a story you’d like to share, or would you like to get involved with the Children’s Cerebral Palsy Movement, connect with us on by emailing ChildrensCerebralPalsyMovement@gmail.com.
We also invite you to join the community on Facebook: https://www.facebook.com/childrenscerebralpalsymovement/