Why is the Walk to Defeat ALS so important to patients, caregivers, friends, and family?
Even more than the sense of community, love, and friendship on Walk Day, your support of the Westchester Walk to Defeat ALS provides much needed care and equipment to patients as well as advancing research for treatment and a cure for this devastating disease. Each of our Walk Teams have their own unique stories about why they Walk each year. We’d like to share one of those stories with you about Team Charley’s Angels who Walk in honor of Charley Braunfeld and in memory of Leon Braunfeld.
When The ALS Association Greater New York Chapter asked me to draft this email, I thought about it for three days, started several drafts and almost told them I couldn’t do it. As devoted as I am to the fight against ALS and as appreciative as I am of all that the ALS Association offers, each draft started to come across as a letter of despair, outlining the difficulties Dad and our family have faced since Dad’s diagnosis almost seven years ago.
But, then, I started thinking about my children (ages 4 ½ and 1 ½), my niece (age 5 ¾…she’s very specific about the ¾) and my nephew (age 3 ½). What would they say if you asked them about Grandpa? What would they say about Walk Day? What would they say if they were asked to share their positive energy with the ALS community?
They would enthusiastically yell “there’s nothing bad about Walk Day!” and run to get their Charley’s Angels t-shirts.
They would tell you that they are Grandpa’s special helpers and talk you through all of the things they do to take care of Grandpa: how to make sure his arms are comfortably positioned, how to drive his wheelchair; how to hold the buttons on the wheelchair and the Hoyer lifts; how to carry Grandpa’s pillows and arm braces from floor to floor when it is time for Grandpa to get ready for bed; how to stand in front of Grandpa when you speak to him so that he can see you.
They would gleefully reenact the ALS Ice Bucket Challenge by grabbing whatever containers they could find and announcing (through uncontrollable giggles), “I am participating in the ALS Ice Bucket Challenge in honor of Grandpa and I am going to challenge [whichever other person was in the room watching their reenactment]!!”
And the youngest would run over to Grandpa’s wheelchair and announce “Bhampa…up” – her method of telling the nearest grown-up that she wants to go for a ride in Grandpa’s wheelchair while sitting on Grandpa’s lap.
Each of them would tell you how much they love Grandpa and how much Grandpa loves them. And what makes their relationships with their Grandfather even more beautiful is that they never knew him before the disease; they were each born after his January 2010 diagnosis. They don’t know who Grandpa was before the disease took over his body. For these children, Grandpa is a paralyzed, fully-dependent man in the wheelchair who can’t talk, move or eat, but who loves old movies, has an eclectic taste in music, who smiles from ear to ear (as best he can) when they enter the room and who loves them to the moon and back.
So, as we each consider our end of year donations … As we each get ready for Walk season 2017… As we each continue to care for the ALS patients and caregivers in our lives and remember those that we have lost – let’s each see the fight against ALS through the eyes of children. Everything we do, no matter how seemingly small a gesture, matters and makes a difference. Every opportunity to join Walk Day is a chance to walk side by side with people you love. Every dollar you can donate is one proverbial step closer to a cure.
Everybody truly can be an Angel!
Want to meet these adorable children? Charley’s Angels will see you at the Westchester Walk in June!
Wishing you and your loved ones health, strength and happiness in 2017.
Jessica B. Turnof