Its Cerebral Palsy Awareness Month!
This is a month to celebrate those with Cerebral Palsy. Yes. I said celebrate. It’s not a time to show pity, or say “oh I couldn’t imagine.” It is a time to celebrate the strength, resilience, and bravery of those who have cerebral palsy.
When Mark was diagnosed with PVL, we knew a Cerebral Palsy Diagnosis was very likely in the future. That is what the doctors said. It’s what the children’s hospital websites said. It was the health studies said. It was coming but there really isn’t anything that prepares you for what that diagnosis comes with.
We thought we could work through the tightness in his legs through therapy. He’s used AFO braces and casts. We’ve done Dysport injections, and most recently had SDR surgery. So far, we’ve done everything to alleviate the pain and tightness that Mark experiences with his cerebral palsy. There are other families who haven’t been able to do these for one reason or another. I know the financial limitations have been one major obstacle we’ve been faced with. The battles with insurances are neverending and the billing departments know me by name.
Mark’s story is not unique. In fact, he is just one of 17 million people worldwide who have been diagnosed with Cerebral Palsy. Yes, it is true that the diagnosis hasn’t changed Mark as a person. It hasn’t changed his other diagnosis or the way others treat him. It’s important to understand that it does come with a few changes, both good and bad.
But this article and every article this month is going to provide education and information about cerebral palsy both from a scientific, factual side and from a personal side. Watching Mark overcome every single obstacle that has come his way, has inspired me to do this blog, start a nonprofit, and hopefully, together he and I can help someone out there. Until he is older and can share his feelings and views and experiences, I am here to provide some insight, especially as a mother with a young child who happens to have a cerebral palsy diagnosis.
This week’s focus: Cerebral Palsy Foundation!
The Cerebral Palsy Foundation is a 501(c)3 nonprofit foundation that focuses on making important strides toward the eventual prevention of cerebral palsy and developmental disabilities, and on translational research, clinical application, and knowledge transfer that can dramatically change lives today.
Key Facts about Cerebral Palsy, from the Cerebal Palsy Foundation:
- CEREBRAL PALSY IS A PHYSICAL DISABILITY THAT AFFECTS MOVEMENT AND POSTURE
- IN MOST CASES, BRAIN INJURY LEADING TO CEREBRAL PALSY OCCURS DURING PREGNANCY
- CEREBRAL PALSY, EXCEPT IN ITS MILDEST FORMS, CAN BE EVIDENT IN THE FIRST 12–18 MONTHS
- CHILDREN WITH CP ARE LIKELY TO ALSO HAVE OTHER IMPAIRMENTS IN ADDITION TO THEIR MOTOR DISABILITY
- MOTOR DISABILITY CAN RANGE FROM MINIMAL TO PROFOUND
- THE RATE OF DEPRESSION IS THREE TO FOUR TIMES HIGHER IN PEOPLE WITH DISABILITIES SUCH AS CP
- CP IS A CONDITION THAT IS PERMANENT, BUT NOT UNCHANGING
- IT IS THE MOST COMMON PHYSICAL DISABILITY IN CHILDHOOD
- THERE IS NO KNOWN CURE
The Cerebral Palsy Foundation provides excellent resources to provide families with information and the tools needed to navigate a new diagnosis. Additionally, they aim to help families become more involved with research initiatives and progress made in CP studies. Because of The Cerebral Palsy Foundation, Mark was able to participate in a study with Stanford University in California. His part in the study will provide future doctors and therapists the ability to study the effects of cerebral palsy in younger children as they age, as well as the benefits of the current treatment options (AFOs, baclofen, Dysport, SDR, etc.).