Lighting up the night to honor our SMA community
On the second Saturday of every August, the setting sun fades and is replaced by the ethereal glow of candlelight. Around the world, the SMA community comes together for a twilight vigil to remember our loved ones who have departed and to honor those living with SMA.
Candle-bearing crowds gather in solidarity beneath the glow of buildings and landmarks that are lit up for the night in Cure SMA’s signature colors of orange and purple.
“The Cure SMA colors are used to represent the entire SMA community and all the hard work and efforts that are put in toward research, care, and support all year long,” Cure SMA notes on its website.
While some gather in groups for the occasion, others choose to have private lightings. There’s no right or wrong way to do it; what’s important is that we’re united in honoring and remembering.
A mom who became an advocate
Spearheading our local lighting ceremonies and other advocacy initiatives is Jessica Biggerstaff, the mother of 2-year-old Waylon, who was born with SMA type 1. Because he received treatment at a young age, Waylon is reaching milestones that were once impossible for a child with such a severe form of the disease. He’s currently making great strides with walking.
Raising a child with SMA looks different today than it did for the parents who raised my generation, but Biggerstaff has embraced advocacy for our entire community. In 2021, she held her first “Light It Up” event downtown and arranged to have a city bridge turned purple and orange. Several SMA families gathered for a candlelight celebration, many of us meeting for the first time.
I asked what this event means to her.
“’Light It Up’ is more than just colors to the community around us, and it is so important that each year we continue to raise awareness for SMA,” she replied. “I appreciate the community coming together the second Saturday of every August to show their support for those we have lost and those who continue to fight day in and day out. Their fight is my fight. Their voice is my voice. I will not stop until we are heard.”
A grandmother who didn’t give up
Susan Ament is another community member who’s taken up the torch of organizing candle lightings. Her grandson Sawyer was diagnosed with SMA type 1 and wasn’t expected to live past age 2. She said his mother was advised to leave him in the hospital because there was nothing to be done.
“I cried for days after hearing this, until I woke up and decided to do something about it,” Ament said.
Sawyer and his mom moved from Pennsylvania to New York to be close to Ament and a medical team that could provide the care he needed. Today, Sawyer is defying the odds at the age of 13, and Ament is raising awareness, holding fundraisers, and engaging with the community.
Ament also hosts one of the largest virtual candle-lighting events, which invites the global SMA community to share pictures with their candles in a Facebook group.
“I have a collection of beautiful photos of families and friends with their candles. I have been doing this for many years to remember those that have lost their battle and those that continue to fight. What’s important to me is spreading awareness and having hope for more treatments,” she said.
Someone seeking to remember
For me, the candle-lighting tradition is foremost a time of remembrance for those who have passed on. It brings me joy to remember them, but that joy is also intertwined with threads of sorrow for the lives lost and the loved ones left behind to grieve.
Even so, this heartbreakingly beautiful occasion will always be one of the parts of SMA Awareness Month I look forward to most. I appreciate the opportunity to celebrate the extraordinary lives of people who blessed us with the gift of their friendship every day they spent on this earth.
In the last year, I have lost family and friends with SMA, as have countless others. Their memories now reside in our hearts with so many others who have gone before them. We’ll reflect on those cherished memories as we light candles again this year, on Aug. 12 at sundown.
We remember these loved ones with every passing day and try our hardest to honor their legacies. I’m grateful, though, to have a designated day just for them. In my eyes, this day is — and always will be — for them.
Join us Saturday in honoring our community and remembering those who are gone but not forgotten.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.