Today is a special day. Parents and professionals will be speaking at the CDC main campus on behalf of Cerebral Palsy (CP) Awareness and advocating for research and better treatments. Dick Hoyt will be the guest speaker this year. He has spoken on Oprah and inspired millions of families over the years with his care of his son. You can read more about Team Hoyt and what the father/son duo has accomplished here, or watch this YouTube video.
Of course, many of you know my oldest daughter Elli had CP. She had severe multi-tonal quadriplegia, which means her muscles were constantly tightening and then almost immediately relaxing, which interfered with anything that required physical effort (that includes muscle groups in her mouth, too — not just arms and legs). She couldn’t maintain any one position for very long because her body couldn’t control the muscle contraction and relaxation. Despite this and her many medical challenges (she had multiple congenital heart defects, seizures, and other conditions and underwent countless surgeries and procedures), Elli was a happy, bright, and motivated child until her death last October. She was learning to read and write and drive an electric wheelchair, participated in aquatic physical therapy (it was amazing how much better her body cooperated with her in the water!), and used a special (and super-expensive) computer to communicate with us, just like most of her friends with CP.
I hope you take the time to read about CP today and spread the word why we need research and awareness. CP is a lifelong disease that requires intense daily support and extreme financial and emotional investment. Families and siblings persevere every day to address the needs of the family member with CP, often at the expense of everyone else. People with CP often have painful spasms and develop other complications (such as spinal curvature and hip dislocations) that hinder their lives and can even cause death. But still, we have been blessed to have our children; they teach us so much. We have become much stronger, more knowledgeable, and less afraid of people with physical or behavioral challenges than we were before Elli joined our family.
Please read on to find out more. Thanks for your friendship and compassion toward Elli and others with CP!
Why is awareness important and why is time set aside for it?
First, awareness is a means of education. Awareness week is time set aside for people to learn about cerebral palsy. Second, it is a time for those living with cerebral palsy to know they are not alone. Others share your challenges, hopes and fears. We are in this together and together we can make a difference.
It is estimated that 764,000 children and adults in the United States manifest one or more symptoms of cerebral palsy. Approximately 8,000 infants are diagnosed with this condition every year. In addition, some 1,200 – 1,500 preschool age children are identified each year to have cerebral palsy.
There is no cure for cerebral palsy but there are many treatment options. This is another good reason for awareness. Raising awareness ultimately supports vital research efforts working on creating effective treatments and those efforts working on decreasing the number of infants and children who develop cerebral palsy.
What can you do to help raise awareness?
It is very simple with modern technology at our fingertips. Simply, forward this message onto everyone listed in your e-mail address book. Listed below are websites with more information about cerebral palsy. Your friends and family can refer to these websites. Also, request your friends to do the same thing – forward this message on. That is how easy it is. Think of how many people we can reach by a simple click of the mouse!
It’s CP Awareness Week!
Do your part to help raise awareness. Just pass this along. Our children deserve the very best. Every step we take in raising awareness will help ensure our children receive the very best.