It’s hard to describe to someone what Cerebral Palsy feels like on the inside, but its like wearing a straightjacket made up of your own skin and muscles. My name is Taylor Acamo I'm a 25 year old single mother with Cerebral Palsy, a disability that affects body movement, posture, and causes impaired muscle coordination. My muscles are weak and stiff, I have occasional spasams and difficulty walking.
From ages 1-4 I was as stiff as a pole, I walked on my tippy toes, and couldn’t flatten my feet or properly bend my knees. My first surgery was on my spine at 4 years old, which was only the beginning of a lifelong series of over 40 major invasive surgeries all over my body (hips, front and back of knees, spine, ankles, feet, femer) all to enable me to have access to the basic movements, like walking or bending over. I still can’t run, put my hair up, or get up from the ground if I fall. My whole life has been a fight to walk and be out of physical pain.
As much as I wish the pain and medical procedures would be done by now, the journey is not quite yet over for me. I am still in excruciating pain everyday and unfortunately am in need of more surgeries. I have two serious problems I need to face in 2018 and I’ve reached the point where I truly don’t want to, but I really have to reach out to a wider network than my family and friends for financial help and support.
Most days it's difficult get out of bed, the daily pain is unbearable... Luckily, something I never thought was possible happened three years ago. I brought my beautiful daughter Savi Nicole into the world. She has become the light of my life and my reason to keep fighting. She pushes me to get outside, to have faith, and to strive to be healthy. Now I’m fighting not just for my life, I’m fighting to be a good mother for her. I want her to have a mother to walk, play, and simply enjoy life with.
To give you a glimpse into my world I want to share a quick story with you. Because of my cerebral palsy my brain sends the wrong signals to my body. From time to time my legs spontaneously give out causing me to collapse embarrassingly on the ground. This has happened all throughout my life, but recently it happens more frequently. The other day I fell in the front of my house attempting to carry the groceries inside. I was completely helpless, crying, and I couldn’t get myself up. My daughter was by my side patting my back and asking “mommy are you okay.” Devastated and helpless, I crawled to the front door, as she carried as many groceries as she could inside.
Savi is 3 years old… I don’t want her to have to do things like this, I want to be healthy, so she won’t have to experience her mom is so much suffering.
CURRENT MEDICAL ISSUES:
So, now we are here, March 2018. I’m forging forward with what this life has to offer even though I’ve already had more surgeries, twists, turns and medical surprises than most people ever have in several lifetimes. I have to look optimistically to the future and this means working with a new team of experts at Stanford, California.
Even through all the surgeries, I still walk with a limp and because of the asymmetric pressures on my spine, I now have multiple spinal fractures in my lower spine, which are cracking more everyday. This needs to be addressed in the near future, the Doctor’s have warned me there is a high risk of paralyzation, so for now, I am holding off and medicating for pain.
Last year, I had 5 foot surgeries to replace the warn out hardware and to fuse my bones together. But, because of accumulation of foot surgeries the bones in my feet my bones are now broken, rubbing together and disintegrating. With that said the doctors gave me two options 1) amputation of my foot or, 2) take out one of the sesamoid bones that are sticking out & re-connect the tendons. Ill being going in for this surgery March 30, with high hopes of being able to walk without having my bones rubbing together. There is a possibility that if the surgery does not work that I will have to go through another set of surgeries. This process will require daily injections, a bone growth machine, and a very intense recovery.
If it were my choice I wouldn't want another surgery in my life. But to fix my current situation these are my options. Which is why I need to be open and honest. I really don't like asking for help but, I don’t have the money alone to fund the next phase of helping my body to repair and heal.
HOW YOU CAN HELP:
At this point, I don’t know how to say it, any other way than to be straight and to the point:
1. I need financial support to be able to pay for alternative medicines and healers to reduce the ongoing pain from my spinal fractures, broken foot bones and to get through this next phase of procedures.
2. I’m in significant medical debt from my many surgeries. The American health system is terribly harsh for someone like me but, I genuinely want to honor the help I have been given and pay this off.
3. For me to be able to get around without needing other peoples support, I want to buy a motor for my current wheel chair that cost $5,000 out of pocket.
With your support I will have an opportunity to try alternative medicines, healers, and options to reduce my daily pain. Pay off my significant medical debt, and have a motorized wheel chair that will help me get around easier with my daughter.
For someone in my position you could never know just how much your support is deeply appreciated and essentially life-changing. Thank you for taking the time to read my story - it’s vulnerable and takes courage for me to share. I am still fighting, doing all I can to stay strong, and keeping my hopes high for every day of this next phase of life with Savi. If you are able to make any kind of donation large or small, or even share my story with your community it could significantly help and would mean the world to me and Savi. We thank you from the very bottom of our hearts. Your generosity and compassion is truly life-changing for us.
I’m going to do my best to update you all on my journey through the procedure and recovery very vulnerably and honest. If you want to follow me and savis journey follow our Instagram :saviandtay
With Love and Optimism,
Taylor and Savi
- Kohleen Alameda
- Michele Zoerb
- Michelle Lane
- Shelley Carter
- Dorothy Hurson
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