CaringBridge Is Funded by People Like You

Make a donation to CaringBridge

Honor Brendon with a tax-deductible contribution to CaringBridge today.

Click here to make your donation.

Brendon’s Story

This is Brendon. Before Brendon was born he suffered a STROKE. It is important for us to share his story so we can raise awareness that CHILDREN can suffer a STROKE. Please share Brendon's story to help in our mission.  Brendon's Smile...Raising Awareness for Childhood Stroke Foundation was created to raise awareness and educate EVERYONE about stroke in children.  For more information visit www.BrendonsSmile.org.

Brendon was born a SURVIVOR and we are so blessed to have him in our lives.

At 19 months of age Brendon was diagnosed as having suffered a stroke while in utero. As a result of the stroke he has been diagnosed with Cerebral Palsy, Right Hemiparesis, Muscular Scoliosis, Speech Apraxia and Aphasia. Brendon currently wears braces on both feet and a splint on his right hand. Brendon is two years old and is only able to say a few words. He struggles with his inablility to vocalize and gets very frustrated with himself. He tries with everything he has to tell the people he loves what he is thinking. Brendon has a gorgeous smile and spirit that you can see by looking into his eyes. Through all of his frustration he manages to keep on smiling. Ask any one who knows him...he lights up a room. His spirit keeps us going!

It's important for every parent to know that doctors may not recognize the symptoms of stroke in children. Brendon should have been diagnosed much earlier than when he was. As a new mother I was told I was overly "paranoid." Due to lack of a diagnosis by several doctors and specialists Brendon was deinied the treatment he so much deserves.

You are invited to share Brendon's journey with us.

It is my goal to share with you every step of Brendon's journey so you understand what it is like to advocate for a child you love and to raise awareness. I don't want another child to be denied what is their's!

Please e-mail us at BrendonsSmile@yahoo.com for any suggestions you may have on helping us spread the word.

Thank you!

Jessica & Stephen Spear

Latest Journal Update

St. Louis Children's Hospital Patient & Family-Centered Care Council...Take 2

I awoke this morning to a terrible dream…  I was about to undergo brain surgery and no one I loved was with me or believed what I was about to endure.  When I opened my eyes, I knew it wasn’t real, yet the feelings were familiar.  I had lived this nightmare; even worse it involved my son Brendon.

This past Tuesday I was taken back to the time where I felt most alone and isolated.  Actually these feelings are not foreign to me.  I have faced them throughout my childhood and as an adult, many times.  But for some reason it hurt more because it was my child who was suffering and not me. Why wouldn’t anyone believe me when I said my child needed help?

I am guessing my dream stemmed from two situations which had occurred over this past week. 

The first was on Tuesday evening when I walked back into St.Louis Children’s Hospital, not as a parent of a patient currently undergoing treatment, but as a volunteer with the Patient & Family-Centered Care Council.  I had been there, in that role before, several years ago, and it wasn’t the right time.  Don’t get me wrong, I wanted to help in the worst way.  That is something I vowed when I started this journey but attending those meetings, at that point in time, wasn’t getting the problems in the areas I had dealt with onto the agenda.  I felt as if I were guided there as a way to pacify me - to put a band aid on a huge gaping wound but not treating it.  It truly baffled me that I was so willing to help be a part of a solution when no one wanted to admit there was a problem.  I walked away feeling helpless and saddened by the thought of others having to endure similar treatment; treated as if their child’s needs didn’t matter.   

However, I didn’t give up on SLCH.   In fact, I found that many of the people (doctors, therapists and staff) who were treating Brendon were truly concerned about his wellbeing.  I felt as if they respected my concerns as his mother/caregiver and they consulted me on how to help my son.  They became a part of the team – Team Brendon.  Originally I was under the impression that I was going to walk right in and Brendon was going to be treated in one department I like to call “The One Stop Shop”.  I quickly learned it wasn’t going to be easy and therefore I had to find other ways to coordinate his plan of care.  I needed to step up; after all I was (and still am) the expert in my child, to get him what he needed (and needs). 

It was Tuesday I found myself back there, at SLCH as a volunteer.   This time is much different, I feel I can help.  I will admit that I had a ton of emotions, hence the dream, which I had blocked come flooding back.  However, I do know that this experience will be better.  I walked away, Tuesday evening, feeling connected with many of the volunteers and staff at SLCH. 

For the past seven years I have single handedly tried to better the lines of communication between parents/caregivers and medical professionals.  I have been modeling how to be a patient advocate.  I have been educating anyone and everyone about effective communication for better patient care and treatment.  It feels really good to be in a place where this can be put to good use. 

Lastly, I will share the second situation from where my dream came from… Over the past year I have seen several of the children I have followed over the months and years (four of them to be exact) undergo brain surgery to stop seizures.  Last night I read two posts from two separate parents. Both were equally emotional for me.  These children and their parents deeply impact my heart and my mind.  They are truly inspirational.  I never want these children or their parents to feel alone and isolated as I once felt.   

Here’s to bettering the lives of others through productive and positive sharing!