#small bird

The rare piping plovers, shot on a Canon rebel t6

Chickadee, shot on a Canon rebel t6

SMA Awareness Month

August 1, 2018

Hello, my lovely followers! It is the first of the month and I have a bit of an update for you all.

Today is the first day of August and today marks the first day of SMA Awareness Month. To mark this special day, I am currently watching/listening to The Theory of Everything while writing this update. Honestly can’t express enough how much I worship Stephen…

Anyway, the month of August has a very special day in it. The second Saturday of August, the eleventh, is the SMA Candle lighting that occurs every year, and last year was the first year I made a severe impact on the social media world.

Thanks to Andy Biersack, more than 1,100 people saw and interacted with my tweet about lighting a candle for those who lost to SMA and to those still living with SMA. It was absolutely amazing and extremely humbling to have the boundless tweets coming in with people sending gifs of candles or finding candles from around the house and taking photos of them to send to me.

It would be absolutely amazing if any of you lit a candle to raise awareness, once again, for Spinal Muscular Atrophy. There is no pressure if for some reason you can’t participate, but if you do, it would be greatly appreciated if you sent me a photo of your candle or of you with your candle. I’ll send out a few reminders in case anyone forgets.

My next bit of news is that I found an article in a magazine while at the doctors about a family who has a little boy with SMA and how he got Spinraza while it was still in the clinical trial phases. This story was in a regular magazine, an Easter magazine from this year. And. SMA. Was. In. It. The article is here if you want to read it.

JOIE DE VIVRE PHOTOGRAPHY

Now, for my last bit of news. I had to write a poem for my English class, so I decided to write it about the past few months. I discovered that it’s been nine months since my grandmother insisted on contacting someone to get the ball rolling on getting me Spinraza. How different the world was just a year ago. I didn’t even think I would be where I am today.

So I wrote a poem, and this poem means more to me than anyone will ever know.

Initium Novum

By:D.S.S.

It all started with a dream.

The future was unclear,

Bursting at the seams,

After living in fear

Of the unknown.

Time to get going.

Time to act.

Get in the car,

Down that winding road.

Wheels are turning.

The cage door opening,

Wings unfurling,

Emotions swirling.

She will not surrender.

Although clipped wings hinder,

She will fly, oh will she fly,

Into that starlit sapphire sky.

The road becomes narrow,

Obstacles arise,

A constellation

Of consternations

That challenge the view

Of the world in the eyes

Of the little sparrow.

Despite these drawbacks,

She’s chosen the right track,

On this bumpy ride ahead;

For this little sparrow,

With internal candle burning,

Looks ahead to freedom

Yearning.

A new dawn breaks,

Mountains fading from sight,

A clear road ahead,

Flying into the light.

It all started with a dream.