Darby's Daddy

Message from Scott Gingold

I have ALS, otherwise known as Lou Gehrig's Disease. It's a progressive disease that affects nerve cells in the brain and spinal cord. People with ALS eventually lose the ability to initiate and control muscle movement, which usually leads to paralysis and an early death.

I am 40 years old, married to my wonderful wife Marissa, and have an 8-year old daughter named Darby. I am paralyzed in all four of my limbs. I can't eat food and I receive nourishment through a tube into my stomach. I can't breathe on my own and rely on a ventilator hooked up to a hole in my throat to breathe for me.

I can't speak but I am able to communicate using a computer that I control with my eyes, similar to what the scientist Stephen Hawking used. I love my daughter Darby immensely and miss not being there for her everyday. To have a relationship with her, I write bedtime stories using the eye gaze computer and email them to my wife who reads them to Darby before she goes to sleep. I also am an advocate for disability rights and write letters and petitions to our government to make changes that would benefit the disabled community. One of the petitions I created to waive the five month waiting period for ALS patients to receive social security disability insurance has gotten over 118,000 signatures. I have written to every member of congress and the white house, to try to get the bill passed. I want to make a difference in this world using the limited abilities I have. 

I currently live at Gurwin Nursing Home in Commack, NY. I am not able to leave the facility for safety and financial reasons. Marissa and Darby visit often, but it’s not the same as it used to be. I do my best to stay involved in everyday decisions and I talk to Darby on video calls with the eye-gaze computer. I love my daughter and think about her all the time. When she dances for me while I play her favorite songs on my computer, I cannot clap for her. When she hugs me, I cannot hug her back. When she smothers me with kisses before she leaves, I cannot kiss her back. Her future is my number one concern. There is not a doubt in my mind that Darby would have had a secure future if I didn’t get ALS. I put myself though college as a self-employed cartoonist doing children birthday parties, bar mitzvahs and communions. I was hired as an animator for Sesame Street after graduating college. Now I cannot even use my hand to scratch an itch.  Even though my family and friends say I shouldn’t feel guilty, I feel terrible that my illness has robbed Darby of the childhood and future I would most certainly have made for her. My wife Marissa is essentially a single parent and is financially struggling without me. A donation to this campaign would help Marissa and Darby not have to struggle to pay bills and would also go towards a college fund for Darby. Whatever you can afford would be greatly appreciated.

Please share this page and video on your social media and email it to everyone you know. I thank you so much for watching the video and reading this message. My entire family is grateful for your love and support.

Sincerely,
Scott Gingold