How the Spinal Muscular Atrophy
Community Destroys Darkness
Spinal Muscular Atrophy (SMA) is a terminal illness, and that’s bad in and of itself. But it’s actually much worse than that. The majority of those affected by SMA are babies and children. As you can imagine, darkness regularly creeps into the SMA community, threatening to consume it, and yet it never does.
Because the SMA community shines bright, and in doing so destroys the darkness as it creeps in. Sure, a candle might fade here and there, or even lose its flame now and then, but someone is always there to use their flame to return light to those in need.
Soon, the SMA community will unite in lighting candles at the annual SMA candle lighting on Saturday August 13, 2016. This is when the SMA community shows just how fiercely it chases away the darkness.
We recently prepared for the SMA candle lighting by making candles at Yankee Candle Village in South Deerfield, Massachusetts. We made a jar candle for Hunter. I showed him the various colors and let him smell their scents. True to form, he chose red, his favorite color. I was quite impressed by the process and decided to make our first Facebook Live video. It was on a Thursday afternoon, so I didn’t expect too many viewers. However, our audience quickly grew and watched as we made Hunter’s candle and shared SMA facts.
We also made candles for some of Hunter’s SMA friends and our family members. We made some candles by filling jars, while we made others by dipping them into wax. It was a magical experience, but you wouldn’t expect anything less from a place where it snows EVERY day of the year. Seriously, it snows every four minutes.
One of the kind employees at Yankee Candle Village escorted us to the snow spot. She wanted to make sure Hunter didn’t miss out on the snow. Hunter and his sister Ava loved it. We stayed for at least six snow sessions. They would have stayed much longer. After all, who wouldn’t jump at the chance to play in the snow in August?
This will be our fourth SMA candle lighting since our son Hunter was diagnosed with SMA Type 1 at eight weeks of age. Since that time, we’ve had our share of darkness creep in on us. We’re thankful to the SMA community for always being there to light our dark days. In turn, we do our best to light the paths of others in their dark times.
Would you like to help the SMA community?
Here are two ways you can help.
First, August is SMA Awareness Month, and you can help the SMA community raise much-needed Awareness by sharing SMA facts with those you know, in person and online.
- SMA is the leading cause of genetic death for babies and children under the age of two
- SMA is a motor neuron disease like ALS
- SMA robs the ability to move, swallow, and eventually breathe
- One in forty unknowingly carry the gene responsible for SMA
- SMA occurs in one in 10,000 births
- There are five types of SMA: Type 0, Type 1, Type 2, Type 3, and Type 4
A doctor walks into a hospital room where you wait to find out what’s wrong with your newborn. You know something’s wrong, but you don’t know what.
The doctor walks closer and begins, “I’m sorry.”
You try to brace yourself, knowing what follows won’t be good.
“Your baby has Spinal Muscular Atrophy. There’s no treatment and no hope.”
The doctor’s words shake you to your core, but he’s not finished. There’s more.
“Your baby will lose the ability to move, swallow, and eventually breathe. Take your baby home and enjoy what time you have.”
Can you imagine being told there’s no hope for your newborn, and that your baby will lose the ability to move, swallow, and eventually breathe? Type 1 SMA parents like me and my husband don’t have to imagine it. This is our reality.
Parents are told this every day. It is their darkest day.
Some parents make their way to the amazing SMA community and find light.
Sadly, others continue to walk alone in darkness.
Fortunately, this will soon change thanks to many amazing SMA researchers and doctors. Two clinical trials come closer to obtaining FDA approval each day. Once this happens, SMA will likely be a manageable disease when newborns are treated early enough.
Second, join us for the annual SMA candle lighting on Saturday August, 13, 2016, by lighting a candle for Hunter, his SMA friends, and all who have lost their battles with SMA. It’s easy to join us. Just light a candle wherever you are in the world.
The SMA community certainly faces darkness creeping in, but never allows it to stay. We will always light our candles and chase it away. We are a community that lives in love and light, not fear and darkness.
Share or comment for a chance to win one of five large tumbler candles from Yankee Candle. The winners will choose their candle from Yankee Candle’s new fall fragrances.
Yankee Candle sponsored this blog post to promote SMA Awareness Month and the Annual SMA candle lighting by providing five winners with a large tumbler candle to be awarded to recipients electronically selected at random who subscribe to the blog and comment or share this post. Winners may choose from Yankee Candle’s five new fall fragrances. Honey Clementine: refreshing orange takes a sweet turn in this honey-dipped citrus delight. Crisp Fall Night: the autumn evening invites with brisk earthiness and dreamy interludes of lavender and woodland notes. Candied Pecans: fresh from the oven, warm pecans glazed with caramel, sugar and vanilla. Caramel Apple Cake: rich caramel and vanilla frosting surrounds apple cake perfection — sugary sweet and finished with crunchy nuts. Autumn Gathering: a warm mix of fading sun and crisp days with harvest fruit, patchouli, and sandalwood.