Living Strong With Cerebral Palsy: The True Story of Amanda Forry-Fino is the title of my memoir to be published this month, March 25. Living Strong with Cerebral Palsy is both inspirational and heartwarming, representing the struggles and victories of a young woman to discover her voice and develop her self-esteem to advocate for all people with severe disabilities.
The month before the launch of Living Strong With Cerebral Palsy: Amanda Forry-Fino’s True Story; In support of National Cerebral Palsy Awareness Day, I gave away book copies to people who ordered shirts from #cpdreamteam. It bothers me that most of the #cpdreamteam shits were purchased by parents for their children. That’s unfair since my book contains language and content that children or minors might not understand. Leading me to adapt my book to be family-friendly. Having revised the early memories into a revised opening and climax within a few days, the book eventually came into its own, Cerebral Palsy Gal.
A note from Amanda Fino: Keep in mind while reading this, I did not write this fantastic blog, yet I’m highly honored to been asked by Richelle & Heaven to copy and paste this onto my blog. Thank You, Richelle & Heaven, for this privilege. Amanda
What is Cerebral Palsy? There is an AMAZING Platform known as “Social Media.” Near and far we’re all connected. Today, wherever you are, we ask that you close your eyes and picture yourselves in a large Auditorium. Are your eyes still closed? Raise your hands about any of the questions we ask. How many of you are Differently Abled or know someone that is? How many of you have ever been subjected to bullying? How many of you have ever felt alone? How many of you struggle to tell the truth about your feelings due to being an Outcast? Now open your eyes and look around. You’re not ALONE. Today we will speak on the topic of Cerebral Palsy. Have you heard of it? My name is Richelle Heath & I’m here with Heaven Ramsey. We’re Co-Founders of the #CPDreamTeam. Together, we bring awareness to the most common childhood motor disability. Sadly, it’s not recognized the way we would expect in 2020 There are over 17 Million People Worldwide affected by Cerebral Palsy. That estimates to one in every 323 children. We even have our own awareness ribbon. Our color is green. Why is green the color of cerebral palsy awareness? Green is associated with new growth, vibrant lives, and renewal of life! This is because no case of Cerebral Palsy is the same. Each and every one of us are affected differently. This is important because we’re all growing and learning daily, living our vibrant lives in our own, unique individual way. Green symbolizes that for our community of 17 Million Strong.
March is our Month and March 25th is National Cerebral Palsy Awareness Day! Let’s address some Misconceptions: First, children with Cerebral Palsy can never learn to walk. This is simply not true. Over half (about 50%-60%) of children with CP can walk independently. Another misconception is that CP is the same for everyone. There are approximately 17 million people worldwide affected by cerebral palsy and no two are affected the same. There is no certain way a person with CP should look or no certain abilities they should or should not have. Finally, a child with cerebral palsy has a limited future. Since thousands of children are affected by cerebral palsy, and a new generation of adults are navigating the world of this disability, this has proven not to be the case. There are many who are affected by CP who are very successful. There are doctors, athletes and even entertainers that live with CP and that’s just a few of the professions. Let me introduce myself… My name is Richelle Heath. I am 43 and I have spastic diplegia cerebral palsy. My journey began in 1976 as an adopted child whose parents knew nothing about cerebral palsy. They were told by a fellow church member that I may have CP because my legs weren’t moving in accordance with typical childhood developmental milestones. After guidance and referrals, I had my first surgery at 2 and my last at 16 years old. My parents gave me every opportunity, regardless of cost and time so that I would have the best chance of walking independently, driving a car, graduating college and working in corporate America. I am proud to say I have accomplished each and every one of those goals. My dream was to be completely independent. The kind of independence that is often taken for granted.
At age 37, I began using Facebook to see if I could find other people with cerebral palsy facing the same daily struggles as I do. I just knew that somewhere out there, others were dealing with similar challenges. As we age with Cerebral Palsy, life gets harder. Doctors who “Treat Cerebral Palsy” are basically non-existent. You can’t cure CP but what you can do is treat the symptoms. Physical Therapy, Occupational Therapy, Speech Therapy and a myriad of medications. It is important to remember that no one with CP is the same. Our bodies are all different & will continue to change, along with our abilities. As you age, disabled or not, your body will continue to break down. That’s life. We ALL need to love ourselves today and every day in the bodies we were given. March is National Cerebral Palsy Awareness Month and March 25th is National Cerebral Palsy Awareness Day. We all want to be heard, we want to be accepted. We want to be understood and cherished for our differences and experiences because together everyone achieves more.
Heaven’s Story My name is Heaven Ramsey. I am 16 years old and I have mild spastic diplegic cerebral palsy. I started my Facebook awareness page “A Stairway To The Stars: Heaven’s Journey With CP” on May 30, 2013. The decision to share my story has changed my life and allowed me to help others. I made the decision to go back to pageants in 2014, when I realized I cannot encourage others to follow their dreams if I don’t follow my own. I participated in pageants from infancy to age 5 but stopped when an imperfect walk became an issue. Since then I’ve held the titles Little Miss Shining Star 2015, Junior Miss Knox County TN MARS 2017, and Jefferson County Fair’s Fairest of the Fair Miss Beautifully Made 2019. I also recently achieved my dream of participating in my first fashion show and hope to model more in the future. With all this, I am so proud to be the co-creator of the #CPDreamTeam t-shirts for National and World CP Day each year. We’ve had 8 successful campaigns with these shirts and are working on the ninth for National CP Day 2020. It has been an honor and a blessing to watch these t-shirts become a centrical part of our campaign for CP awareness. In conclusion, I hope the take away from my story is that no matter your struggle, you should never let anyone or anything hold you back from reaching for the stars and following your dreams. Richelle & Heaven