The Washington University School of Medicine,
Department of Pediatric Neurology
The International Alliance for Pediatric Stroke
Proud Partners of Brendon's Smile
ABOUT US
In seeking help for Brendon's diagnoses it was not uncommon for me to be met with responses by support organizations, my peers, and medical professionals such as I didn't know an unborn baby could have a stroke! or You should just count your blessings! This made the task of helping my son all the more daunting. In order to get help for him I had to fight every step of the way.
As I strived to help Brendon, I vowed to make the situation better for others. If I didn't make a change, my own child would suffer as well as countless others. I became driven!
With the support of Stephen, my husband and Brendon's father, it became my mission to increase awareness and knowledge about strokes in pediatrics. As I researched to find where my efforts could be most beneficial to further the cause, I discovered a lack of knowledge among the medical community, lawmakers, and stroke support organizations; there was very little funding for research, and minimal cohesiveness between pediatric stroke groups. It seemed as if either these groups were unaware of each other or just didn't work in collaboration with each other. I witnessed repetitive efforts which sometimes hindered achievement of the common goal. This seemed to slow progress for the betterment of those impacted by pediatric stroke and sometimes was even prohibitive.
As a mother simply wanting to improve the quality of life for her child, and now for others, I found this lack of knowledge and cohesion to be extremely disturbing. It was at that point Stephen and I co-founded, out of necessity, Brendon's Smile Raising Awareness for Childhood Stroke © to fill in the gaps and to further the cause. ~Jessica Spear
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.
I was alone, often times isolated, during the quest for answers and in the months following Brendon's diagnosis due to that lack of information. No person should have to go through such desperation and so many struggles in trying to help her child! Most importantly, no child should be deprived of essential care!
Within seconds of learning Brendon's diagnosis, my mind was instantly flooded with questions ranging from How could this happen? to What will Brendon's future hold?
Once Brendon was diagnosed, the next step was to organize and put into action a care plan. It was a daunting task. At this point, I was overwhelmed by the fact Brendon had already missed out on 19 months of care. I was frustrated because I had felt something was wrong within the first two weeks of his birth. Being a new first-time mother and all that entails (fatigue, exhaustion, sleep deprivation...) I didn't know if my concerns were real or if I was just overreacting. I had been told this throughout those 19 months by family, friends, and medical professionals. During the standard Well Baby checkups I found it difficult to articulate my concerns. As Brendon developed, I was beginning to witness more tangible signs. The main one: his right foot was turned out and under, causing him to drag it behind him and to frequently fall when he took steps.