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Tuesday, October 27, 2009


I wanted so badly to tell you all about this amazing moment I had a few weeks back. My life was touched by the action of others. I will start with a picture:

Her name is Sophia.

On September 24th, 2009 we received a knock on our side door. It was a friend of ours Dave. He said he had run into a couple of bike riders from NY and that he invited them to come to our house for a nice bonfire in the city. We have a great view and a cozy backyard with plenty of seating. So this became an impromptu gathering of friends to welcome two strangers. When they arrived it was just a nice sit down and chatting, then they told us the story of Sophia.

"Sophia has Spinal Muscular Atrophy"

What is this we asked?

In her case she has a form of SMA that is diagnosed to be terminal in the first 2 years of her life.

They are riding from NY to California to raise money for a clinical trial being done in California. As they ride for a cure for Sophia they are also sending off Ryan as he readies himself for the Marine Corp which he reports to in November.

I didn't know anything about this disease, I had never heard of it before this encounter.

The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.

SMA affects muscles throughout the body, although the proximal muscles (those closest to the trunk of one’s body - i.e. shoulders, hips, and back) are often most severely affected. Weakness in the legs is generally greater than in the arms. Sometimes feeding and swallowing can be affected. Involvement of respiratory muscles (muscles involved in breathing and coughing) can lead to an increased tendency for pneumonia and other lung problems. Sensation and the ability to feel are not affected. Intellectual activity is normal and it is often observed that patients with SMA are unusually bright and sociable. Patients are generally grouped into one of four categories, based on certain key motor function milestones.

Sophias Story can be read here:

The journey of the two riders can be read here: or linked to through the main site above. I wanted to write this to ask to spread the word. Maybe someone can help them more than the few dollars I have to offer, Maybe I can spread the word to those who stop by here. Maybe by writing this someone will become inspired to say something to others that can make a difference and Maybe, just Maybe they can find a cure for Sophia.

Ryan and Dennis, May you find a grand adventure on your journey to California!



Martha said...

God Bless Sophia, her family, and these bike riders. Thanks for sharing, Kalei.

The Blonde Duck said...

That is so touching. Thanks for posting.

The Rambler said...

Thanks for sharing Kalei!!

prashant said...

Thanks for sharing
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