January 12-12-12 Project: The Lesson

January 2012 was an opportunity to set sail on a personal project known as 12 months, 12 journeys, 12 lessons. This month’s project featured a neuromuscular condition known as Spinal Muscular Atrophy. I had an opportunity to learn about the condition, obtaining a glimpse into the life of my friend Blake Watson living with SMA type 2. This month offered an abundance of lessons. It’s difficult to grab hold of just one lesson; there’s one that stands out. Allowing yourself permission to adapt to life’s challenges. Giving yourself time to grow, change, and readjust. Blake eloquently states in the interview.

“Having SMA is all about adapting. I just have to remember that. If something doesn’t work out, instead of just being like, “Well, this isn’t to work out,” I should probably just really creatively think of ways to adapt to make it workout I guess.”

I want to thank Blake Watson for being open to speaking about his personal journey living with SMA. I am blessed to be able to share his personal story with you. I am excited to welcome the months ahead.

Much love,
Marissa

Podcast: January 12-12-12 Project Member Blake Watson

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Image of Blake Watson from ihatestairs.orgPodcast interview featuring 12-12-12 project member Blake Watson

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 About Blake:

Blake is a self identified computer nerd. He has a passion for designing websites which he exercises by doing freelance and volunteer projects. He has a long-standing love affair with WordPress. Blake holds a BBA in Business Information Systems and an MBA, both from Mississippi State University. On a more personal level, Blake likes to write. He dissects the ups and downs of life with a disability on his personal blog. Blake believes that God has blessed him and is thankful for his family, friends, and community that have made his life fulfilling.

Condition:  Spinal Muscular Atrophy (SMA) Type 2

SMA is a genetic neuromuscular disease. The disease manifests as muscle atrophy and severe weakness, resulting in a loss of common functions like walking, standing, dressing oneself, feeding oneself, etc. SMA is a progressive condition, meaning it gets worse over time. The severest form of SMA, Type 1, kills more babies than any other genetic disease.

Connect with Blake:

Twitter: blakewatson
Blog:ihatestairs.org

Learn more about Spinal Muscular Atrophy (SMA)

To learn more about Spinal Muscular Atrophy (SMA) please visit the fantastic website, Stop SMA, designed by Blake Watson.

Much love,
Marissa

 

Audio Transcription:

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Honoring and Uplifting Estella Sweetman Lopez #smashsma

The 12-12-12 project has taken me on an educational journey. January 2012, I’m learning about a condition known as Spinal Muscular Atrophy. According to StopSMA.org: Survival Motor Neuron1 produces a protein which is necessary for the survival of certain nerve cells in the spinal cord, referred to as motor neurons. When you have a missing or defective SMN1, your motor neurons are not getting enough protein and that causes the neurons to shrink and eventually die. The inability to use muscles causes muscle weakness, and eventually the muscles will atrophy. The condition is fatal.

As I continue to learn about SMA, a single fact continues to resurface. “SMA is the number one genetic killer of children under two.” Often times I hear a statistic or statement and I become unsure how to rationalize or conceptualize. That has changed.

I recently learned about the passing of an 8 month old, baby girl, by the name of Estella. Estella was diagnosed with SMA1 at a routine 8 week check up. Estella passed away in the arms of her mother on November 13th, 2011 at 1:25pm.
After hearing about Estella’s story, the statistic became very real. Estella’s life was cut short, but her spirit lives on through her parents who are dedicated to bringing awareness and eradicating the disease that took their daughters life.

Estella’s parents want to educate, raise awareness, and prevent another family from enduring the loss and pain of loosing a child to this terrible disease. They have started a petition to the UK government requesting that every woman be offered free genetic screening for the disease.

How can you help Smash SMA?
Please sign the petition.

Learn more about Estella and her legacy:

Twitter
Blog

Much love,
Marissa

12-12-12 Project: January STOP SMA

Marissa at doctors appointment wearing a StopSMA.org t-shirt

For the next 12 months I am committed to focusing on a different condition every month other than my own vestibular (balance) condition. I am calling this personal project the 12-12-12 Project.  I want to educate myself and bring awareness to the condition via the blog. January 2012 the focus is on learning about a condition known as Spinal Muscular Atrophy. This is a collage of photos taken at my recent doctors visit. I loved rockin a StopSMA.org t-shirt. I had a different perspective at my doctors visit. I felt proud to be supporting another condition. I didn’t feel as alone! Please take the time today to visit StopSMA.org and learn about eliminating SMA! Thank you so much!

Much love,
Marissa

Fascinating Memoir. Life Rolls On: My Life With SMA

This month’s 12-12-12 project focuses on Spinal Muscular Atrophy. To learn more about the condition I am combing through information from different sources. I stumbled upon this gem:

Book cover for Life Rolls On.A fascinating memoir. Rich Ochoa and Duane Hale team up to document the life of Duane Hale living with Spinal Musical Atrophy.

The book does a beautiful job giving insight into Duane’s struggles and triumphs living with Spinal Muscular Atrophy. I appreciate the focus on Duane’s wife as a caregiver and support in Duane’s life.

“Life Rolls On: My Life With SMA” personalizes Spinal Muscular Atrophy. This book allowed to see the disease form the perspective of someone living with the condition.

I highly recommend this book. I was fully engaged in the story and thankful for the lessons I was taught.

Much love,
Marissa