My name is Tyler Parish, I’m a 43-year-old artist and entrepreneur from the vibrant city of Boston, though sunny Miami is my second home. My life has been rich with creativity, adventure and personal evolution. Two days before Thanksgiving, my neuromuscular condition, Spinal Muscular Atrophy, led to acute respiratory failure, plunging me into a coma and nearly claiming my life. 

Spinal Muscular Atrophy (SMA) is a genetic condition that primarily affects the motor neurons in the spinal cord, leading to muscle weakness. Over time, SMA can significantly impact physical abilities, including most activities of daily life, and even breathing. Its complications can vary widely, but they often include respiratory challenges such as those I’m battling with now.

Through the swift actions of medical professionals, I was saved by an emergency intubation followed by a tracheostomy. I woke on life-support, my eyes were swollen shut, I was unable to speak to my loved ones or describe to caregivers the assistance that I needed. I communicated through hand gestures at first and then by using an alphabet board while waiting for my hands to be strong enough to text message. It was over a month before I could talk, eat anything or even take a sip of water.  Now, after several months in the hospital, I am slowly regaining my strength and abilities while embarking on a new chapter, one of recovery and adaptation to my evolving circumstances. 

Living with SMA has taught me many lessons including patience, resilience, adaptability, and the strength to face unanticipated challenges. This campaign is not just a testament to my journey with SMA, but also an ode to the courage and perseverance that all individuals living with this condition exhibit every day.  It’s a bridge towards a future where I can continue to live with dignity and independence despite these recent hurdles.  I’m fighting each day to create a new future.  


Your support will play a pivotal role in this journey. Here's how your contributions will make a difference:

 **Home Adaptations**: Ensuring my living space is safe and accessible is crucial. Funds will go towards modifying my home, making it a sanctuary that caters to my needs.

**Travel for Medical Appointments**: With the complexity of my medical condition, regular appointments are a necessity. Your donations will help cover the travel expenses, ensuring that I can receive the best care without the stress of logistics.

 **Caregiver Support**: The role of caregivers in my life is indispensable. Funding will assist in covering their recruitment, travel, accommodations, and food expenses, ensuring they are well-equipped to provide the care I need. As you may know there is a serious shortage of nurses and caregivers right now. 

**Wheelchair Accessible Vehicle**: Public transport, once a staple in my life, is no longer a feasible option. I aim to acquire a wheelchair-accessible truck, offering me the freedom to travel safely and comfortably.

**Unexpected Costs**: My new reality has come with many unanticipated costs, mostly for items and services that help to keep me comfortable and safe. Many of these are not covered by insurance and have come directly out of pocket.

Your generosity will not only support these practical needs but also empower me to continue my artistic pursuits, contributing to the community that I love and call home.

In the face of adversity, the human spirit’s resilience and the power of community shine the brightest. Every donation, big or small, is a step towards a life defined not by limitations, but by possibilities. Together, we can turn this challenging phase of my life into a story of triumph and human solidarity. Thank you for being a part of my journey.

I would like invite you to explore my website with my artwork, as well as my YouTube channel or connect with me on social media:
 https://thetaoofty.com 

New York Times article January 31, 2024
Written by Dr. Daniela Lamas 
https://www.nytimes.com/2024/01/31/opinion/gene-therapy-cure-diseases.html