20 years ago, I founded Direct Effect Charities with my late husband Paul. I did so as my friend Jeff Zaslow asked me to take over his Letters to Santa program.
He was fantastic at it and I learned from the best. He once got a little nervous when I took on a high school to participate, but I think he would be most proud of that. It is an occupational school for disabled young adults and it’s truly one of the happiest places on earth. It’s right up there with Santa’s north pole if it actually existed.
Essentially, that school is responsible for my ability to face disability, as in the past 10 years, I have become severely disabled. Through it all, I have continued my charity work via the generous hands of thousands, all of whom have helped to touch the lives of countless children in need.
While it is difficult for me to ask for help personally, I’ve come to a crossroad in my life that only has one direction and I need your help to get there.
I have the worst case of autoimmune disease that my doctor has ever seen. She cannot believe my legs are still working and that I’m not confined to a wheelchair, given the severe deformities throughout my body.
My hands and feet are crippled and my arms partially paralyzed. She said it defies explanation, but I told her it was because I still have a little further to walk.
I desperately need to relocate to a warmer climate for my health and will be moving the charity's home base from Chicago to California. This is also to be close to my daughter, who technically graduated in 2020, without a ceremony. There is one now set for the end of summer and I need to be by her side.
I call her Sammy the Elf and she has been playing Santa Claus since she was three years old. She truly loves it. While the charity is 20 years old in Chicago, we have operated in California for the past 3 years as well. The plan is to continue our work in both places.
My funding goal includes the cost of:
1. Getting my broken and fragile body across the country. This is no easy task.
2. A custom electric wheelchair
3. Rent during this transition period
4. An assistant to help me get set up
5. ADA friendly electronics to help continue my work
In addition to my ailments, I have severe osteoporosis and it often feels like every bone in my body is being crushed in a vice grip.
I have had three spinal fusion surgeries on my neck as well and this has made it all worse and partially paralyzed my arms. A rough nurse literally broke my arm in 2019 while in the hospital.
This, while I was there to get my toe amputated unnecessarily after they misdiagnosed the infection in it only a month prior. A hospital patient representative literally advised me to obtain an attorney.
I actually did and after supplying him with all of my records, he sat on the case for a year and then told me he needed to “make hay” as a result of coronavirus and my case was just not worth it to him anymore.
He urged me to obtain council but when another lawyer stated “you just said your bones were like glass” in response to me telling him that a nurse broke my arm, I gave up.
All of this has made it impossible to travel by air. It is much too difficult and extremely painful for me and I will need to get to California in a chartered bus. It will be timed to arrive at graduation about a half hour before it starts. This will allow my body to function for a little while when I arrive.
I have waited for this moment for 23 years and my heart knows that I need to be there. I have missed too many important events due to being sick, and I just can’t miss this one. I am incredibly proud of the woman my daughter has become and I want to celebrate with her and spend the rest of my days nearby.
I will be leaving all of my furniture and household items behind and I am searching for a Chicago family in need to give them to. Perhaps one who has recently lost all of their belongings. A similar kindness was once bestowed upon me and it is now my opportunity to pay it forward.
I will be hauling my artwork and the treasures of my life on the bus. Once in California, I will have secured a temporary place to stay while I search for my forever home and set up the charity office within it.
I need to find help before my legs stop working.
I also dream of an electric wheelchair so I can be a part of life again. Except for hospital stays and doctor visits, I have been homebound entirely for over four years due to stairs I am unable to navigate.
It’s time for me to see the sun again. Not to mention the trees, the birds and the clouds.
Once I am settled in California, we will continue working on our PillowTalk Meditation program, which we are now implementing in Chicago schools. We provide classrooms with a pillow I created to help with the pain in my neck. Because pillows and meditation are both near and dear to my heart and mostly what I use for pain relief, I put the two of them together.
The students wear the pillows which are equipped with little Bluetooth speakers and the guided meditations we provide are played through them.
We offer free zoom classes as well. With any luck, the school will resume in the fall and we will continue our letters to Santa program as usual, both in Chicago and California. If my funding goal is exceeded, donations beyond will support all of our charity programs.
If you have made it this far, thank you for listening. It is difficult for me to talk about my disabilities, as I do not want people to feel sorry for me. In spite of them, I have managed to lead a productive life and find joy in the service of others. This fulfills me, and I am happy.
I would be grateful for anything you can do to help, whether it be donating or sharing my campaign, or simply cheering me on and sending me positive energy and thoughts.
With Love and Gratitude,
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- CAROL NEWTON
- Marcela Diaz De Leon
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