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Orange County Chapter

Irvine Walk

Team Spiffy

Our story
    My mother was diagnosed with Bulbar ALS in May of 2015 after many tests were performed—there is no positive test for ALS, they rule everything else out. It started as a simple slur in speech, to full blown aspiration of all foods being consumed. She was then put on a feeding tube to perverse her lungs from the bacteria the foods caused. She was unable to speak only a few months after the feeding tube was placed. From there, her muscles began to spasm and cramp. You could see the pain in her eyes at this point. Nothing gave her relief; this was the hardest stage to watch. What seemed like the blink of an eye, she was unable to walk on her own and now relied solely on a breathing machine at this point. She passed away on May 13th, 2016—almost exactly one year from her diagnoses.

What is Bulbar ALS?

   "Patients with bulbar onset ALS make up an unusual group because of the progressive and multi-system nature of their illness. Bulbar disease accounts for the majority of the worst ALS symptoms. The neuromuscular disabilities associated with bulbar ALS cause a myriad of related symptoms associated with swallowing, speech, and respiration. Although the rate of progression cannot be predicted, a pattern of progression is noted. Loosing the ability to swallow changes eating from a pleasurable task to a burden of survival. Loss of communication effectively imprisons the patient in a state of isolation."


Background
      My mother, Theresa Avera, was born September 17th, 1950. She grew up in Long Beach, Ca. My mother attended Saint Anthony’s all-girls school and went on the Long Beach City College. From there she went on to CSULB and graduated with a BA. She began working for the city of Irvine and working towards her masters. Eventually she landed a job at St. Bonaventure in Huntington Beach as the Youth Minster. She did this for 25+ years. Children/Teens were her passion and loved every second of it. She was married and had two daughters; my sister and I were her biggest success, she would often say. From there she went on to Hospice Chaplain at St. Mary’s and then for Vista. At 62 she retired.


I believe in a world free from the “ALS Chains”
    I see a world free from ALS, this being one of the things I’d like to see in my life time. With your help we can raise the money desired and the awareness needed to obtain that goal. I am asking everyone’s help in the steps needed to continue that journey and ultimately achieving the goal. I lost my mother at 26 years old. If I can help in anyway so that one day no other child has to experience this pain, it will be my life’s goal! Please join me on November 5th in my mother’s honor, and those who have also been affected by ALS.

 

 

Why We Need Your Help

    Thank you for helping us reach our fund raising goal! Together we can make a difference in the lives of those affected by Lou Gehrig’s Disease. Our team is committed to raising money to support people in our community with ALS and spread awareness of the urgency to find treatment and a cure. Please consider joining our team in the Walk to Defeat ALS® or choose a team member from the list and donate to our cause.

    Often referred to as Lou Gehrig's Disease, amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages 2 to 5 years from the time of diagnosis.Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.


Team Spiffy - Join Team Raised
LEVEL 3 FUNDRAISER Kristen Schreiber $1,445.00
Shantel Corbin $0.00
Claudia Farish $0.00
Samanthe Farish $0.00
Jeremy Horton $0.00
Denotes a Team Captain
MT Pharma Quantum - National Sponsor

Cytokinetics - National Sponsor