Colleen’s Story

Site created on September 14, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Sonia DeBenetti-Carlisle

In February, at age 56, my mother Colleen DeBenetti was informed after nine months of visiting multiple doctors, that she has a life-altering diagnosis of Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease. We waited and fought for any diagnoses, but we were simply not prepared or expected anything like this. 
 
ALS is a ruthless, life-robbing disease. Its victims can lose the ability to walk, dress themselves, talk, swallow, and ultimately breathe. All the while leaving the mind perfectly intact. In my mom's case, her ability to speak and eat is what appeared first. After losing 40lbs it became next to impossible to understand her, and she is the life of any situation. It was devastating for all of us to watch. We felt hopeless. 
 
Within weeks of her diagnosis, she made up her mind to fight this overwhelming disease with more determination than we can fathom.  She survived cancer, now she intends to survive ALS.
 
Colleen is much more than becoming an ALS fighter. She is a loving wife, Mother (of two but a mother to many), grandmother (of two and two fur babies), godmother, sister, cousin, aunt, and a best friend to many. She sees past the quality of life of just living with ALS, she is looking forward. Creating plans that allow her and her family to live life to the fullest. 
 
Colleen is working with some of the world’s leading ALS researchers and clinicians. With her survival instincts and spirit, she is looking into Stem cell treatments, clinical trials, and recently approved prescriptions that will help slow down progression. She has the will and determination to do it all! 
 
Colleen will be beginning the process of treatments and this GoFundMe campaign was established so that Colleen can pursue treatments, travel expenses and to help aid in the overwhelming medical bills.  
 
Follow her progress at: 
www.colleenfightals.com/
www.facebook.com/pg/colleenfightals
 
We would like to thank you in advance for any financial support you can provide along with continued prayers, help and good thoughts. 
 
On behalf of Colleen, Dan, Sonia, Josh, Ryan, Analia, Natalia and Alan and those that love them, our sincerest gratitude. 
 
Hope anchors the soul.
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