As a mother/caregiver and an advocate I have found, on this journey, that it is important to be the one who coordinates my child's plan of care. It can take time to piece together a team for proper care and treatments for a child, depending on his/her needs. Every child is different and, therefore, there is no specific protocol. My recommendation to all who are in this type of situation is to seek answers and don't stop until you feel you have them for your child. I have also found on this journey that there may be more than one way to accomplish meeting the needs of your child. It often depends on what resources are accessible to you in your part of the world and the specific needs of your child.
Always remember you are not alone in your journey and there is hope!
~Jessica J. Spear
World Pediatric Stroke Association
The World Pediatric Stroke Association is a step forward in the natural progression of the accomplishments of Brendon’s Smile Raising Awareness for Childhood Stroke and its initiatives of global awareness, education, research, advocacy and outreach.
In 2015 the Board of Directors unanimously voted on changing the name to the World Pediatric Stroke Association.
It is more than a simple changing of names, this is a refocusing and redirecting of our work. Our experience over the past eight years, has allowed us to best identify where the need for awareness and education for pediatric stroke is most effective.
About Jessica and her family
In April 2007 my 19 month-old son Brendon was diagnosed with a perinatal stroke, which he suffered before birth. (Perinatal - pertains to the weeks just before birth, during, or within the first month of life.)
Brendon displayed many signs and symptoms throughout the first 18 months of his life. The most obvious were as follows: movement specific to the left side of his body, using only his left hand, and difficulty with expressive speech. They went undetected by several medical professionals. The stroke resulted in long-term affects including right-hemiparesis (or weakness on one side of the body) and speech issues. For Brendon it is a form of cerebral palsy because the damage occurred early in development (during pregnancy, before the age of three). The delay in diagnosis denied him integral therapies and treatments during the early months after the stroke and in his life. This is a crucial point when the brain is able to change and form new pathways around damage (or neuroplasticity).
As Brendon’s mother, desperately seeking answers and help for him, I discovered there was a tremendous lack of awareness and knowledge about strokes in children, including newborns...read more