I am running for a woman who has ‘run’ miles for me, my family and countless others. As a mom, wife, nurse, aunt, grandma and friend she has led the pack and guided our family and many others to start on their own life journeys with love, strength and dignity. But unfortunately my mom who once helped others keep pace has found now herself diagnosed with Ataxia and on an unsteady journey.
Ataxia is a degenerative disease of the nervous system where the cerebellum is compromised. Since it serves as the coordination center, Ataxia results in a significant loss of coordination affecting the fingers, hands, arms, legs, body, speech and eye movements. There is NO CURE. And for my mom it has affected all aspects of movement, her whole life.
In 2010 my mom started having bouts of dizziness. Searching for answers we took her to several doctors, countless hospitals, researching every moment until finally we had a match, a disorder called Ataxia. My mom’s MRI’s showed her cerebellum shrank causing her basic motor skills to fail and within a few months she was in a wheelchair and to this day we do not know what caused it. The most basic skills we take for granted like eating, bathing, reading and many more are now challenges. As an extremely active woman, with a big personality, she was the epitome of an independent strong leading woman, a true supermom. So for her to not be able to walk, speak clearly, write her own name, see without constant blurriness and care for herself, it was devastating.
Her New Normal
Over the last 3 years the medical expenses have been staggering. Ataxia is not currently curable in the sense that a person “gets well”. For my mom there will never be a return to “normal”. But what we can do is provide an environment that is therapeutic, strive to reestablish and/or improve motor control and assist her in having a better quality of life and as functional as it can be.
My mom needs help creating an environment that can work for her new normal, items to help her life be more accessible and functional. The treatment of incoordination involves various therapies and the use of adaptive devices to allow one to remain as independent as possible. Devices to assist with movement, writing, eating, self care as well as communication devices to help her impaired speech would be a great benefit to her. Unfortunately we are limited in what we can obtain from Medicare and on our own.
How You Can Help!
This is where I would like your help. Over the last 4 months I have been training for the Chicago Marathon. Working with a training group I have been steadily increasing my mileage starting from 5 miles all the way to 20 miles which I completed last weekend! Every week since May I have put my mom in my heart as I ran knowing I am doing this for her and in her honor. I have done my part and I am ready for the marathon which is in less than 2 weeks away on Sunday, October 13. Would you please consider helping me go that extra mile and sponsor me so we can make her environment more accessible helping her lead a more functional and independent life?
A dollar a mile, 2 dollars a mile, anything, any amount is greatly appreciated and will help. Funds raised here will go to help her directly. But if you wish to help her in an indirect way consider donating to the National Ataxia Foundation in her honor. 100% of the funds donated here on this site will go to assist my mom in her rehabilitation. Donations are handled through Pay Pal. You do not need a Pay Pal account to donate. Please click the guest link in the Pay Pal payment popup to use a credit or debit card.
If you choose to donate please consider also leaving a note, picture, or video message for her. Please post your message on her fundraising site, her Facebook page, email me or through regular post. I will assemble them all together to present to her and show her how much she is beloved.
I have been keeping my mom updated on all my training runs so she has been training with me in spirit but the best part is that she will be there at Mile 26 for me!!! I will run to her across our great city of Chicago and I would love to be able to bring your well wishes along with me to her and to the finish line.
With love and gratitude,
Sybil with my sisters Stephanie, Suzanne and Selina.
October 13, 2013. Bib #52335
PS. If you prefer donating by check please write check to Sol Santos but mail to it me and I will add it to her collection.
Sybil Santos-Burgan 4513 W. Sunnyside Chicago, IL 60630
Pss. If you have well wishes for my mom please post them on my facebook page for her or send it to her email box [email protected] or by post to
Sol Santos c/o Sybil Santos-Burgan
4513 W. Sunnyside
Chicago, IL 60630