To date I have done far too little to help my incredible aunt Irene fight her long battle with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease. Today I am taking action to share her story in hopes of getting the help I know she would so greatly appreciate.
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed. The majority of ALS patients only live 3-5 years from the time of diagnosis. Let me clarify when I say that my aunt is incredible; Irene has been struggling with this disease for an astounding 16 years. When she was diagnosed in 1997 I was eleven years old and her sons, Chris and Suede, were only seven and two. Obviously it was difficult for us to grasp as children the severity of what this meant, but as we grew older we watched our aunt and mother grow weaker. With each passing year our family learned more about ALS and witnessed the devastating effects on my aunt's health. It wasn't long before she was restricted to a wheelchair, had difficulty speaking clearly, and was unable to feed or take care of herself. As tragic as this was, the strength of my uncle and cousins gave us all hope that she could continue living a happy life as long as she could survive. I watched my uncle David (who had his own difficult situation living with Tourette 's syndrome) affectionately care for my aunt and quickly make changes to accommodate her disabilities while my little cousins learned to cook, clean, and even help bathe and put makeup on their mother. I also watched the pain build in the eyes of my grandparents and my father as they saw sweet Irene struggle.
My aunt was a beautiful soul before her illness and has become even more beautiful and inspiring through her fight. ALS has simply become a part of my family's life. Unfortunately, due to the long time they have all dealt with this situation, the emotional and financial toll is simply too much to bear alone. Recently, Irene has completely lost vision in her left eye due to muscle detachment and her speech is becoming more and more difficult to understand. Her vision problems have led to an increase in medication and supplements which also means an increase in the cost of her already expensive care. Aside from easing their general financial burdens, the major goal at hand is to get Irene a new handicap accessible van. Her current van has no A/C, is not mechanically reliable, and has a broken lift which makes it very difficult and dangerous when getting her in and out of the vehicle. Traveling for her has become a complete nightmare and we want to change that.
If you have ever met my aunt, you know how much she and the family deserve this. If you have ever been affected by ALS or any other terminal illness, you know how hard the road can be. Please find it in your heart to donate even the smallest amount to help. Thoughts and prayers are needed daily. Thank you for taking the time to read our story.
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